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Perception of palliative care practice of health care professionals in a mental institution : a descriptive… Tanner, Carolyn A. 1991

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PERCEPTION OF PALLIATIVE CARE PRACTICE OF HEALTH CARE PROFESSIONALS IN A MENTAL INSTITUTION: A DESCRIPTIVE STUDY By CAROLYN A. TANNER B.A.H. Queen's University at Kingston, 1987 B.S.W. University of B r i t i s h Columbia, 1989 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SOCIAL WORK in THE FACULTY OF GRADUATE STUDIES (School of S o c i a l Work) We accept t h i s t h e s i s as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA January 1991 ©Carolyn A. Tanner, 1991 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department The University of British Columbia Vancouver, Canada DE-6 (2788) ABSTRACT The p u rpose o f t h i s d e s c r i p t i v e s t u d y i s t o i n v e s t i g a t e t h e p e r c e p t i o n o f p r a c t i c e o f h e a l t h c a r e p r o f e s s i o n a l s a t a m e n t a l i n s t i t u t i o n , as i t p e r t a i n s t o t h e i r work w i t h d y i n g p a t i e n t s , and a l s o t o i d e n t i f y a r e a s o f change. The c o n c e p t u a l framework i s c o n s t r u c t e d o f s i x f a c t o r s i m p o r t a n t t o p a l l i a t i v e c a r e t h a t have been i d e n t i f i e d from t h e l i t e r a t u r e . These a r e p e r s o n a l d e a t h a n x i e t y , o r g a n i z a t i o n a l s t r u c t u r e o f t h e h o s p i t a l system, r o l e e x p e c t a t i o n s of p r o f e s s i o n a l s , teamwork, e d u c a t i o n and t r a i n i n g f o r c a r e o f t h e d y i n g , and conveyance and exchange o f d i a g n o s t i c i n f o r m a t i o n . The sample s u r v e y e d by a w r i t t e n q u e s t i o n n a i r e i n c l u d e d p h y s i c i a n s , p s y c h i a t r i s t s , h e a l t h c a r e w o r k e r s , s o c i a l w o r k e r s and p a s t o r a l c a r e w o rkers from t h e G e r i a t r i c D i v i s i o n o f R i v e r v i e w H o s p i t a l , P o r t C o q u i t l a m . The f i n d i n g s i n d i c a t e t h a t age, sex, m a r i t a l s t a t u s and l e n g t h o f w o r k i n g e x p e r i e n c e a t R i v e r v i e w H o s p i t a l had no s i g n i f i c a n t a s s o c i a t i o n w i t h p e r s o n a l d e a t h a n x i e t y . I n f o r m a l e d u c a t i o n s uch as workshops and i n - s e r v i c e s had a s i g n i f i c a n t c o r r e l a t i o n w i t h p e r s o n a l d e a t h a n x i e t y , as d i d p e r c e p t i o n o f b e i n g competent and/or c o n f i d e n t about w o r k i n g w i t h t h e d y i n g . The s t u d y a l s o r a i s e d c o n c e r n s t h a t not a l l was b e i n g done f o r t h e d y i n g p a t i e n t s and t h e i r f a m i l i e s a t t h i s i n s t i t u t i o n . S u g g e s t i o n s such as e d u c a t i o n and t r a i n i n g , s u p p o r t mechanisms, and l e s s s t e r e o t y p i n g o f p r o f e s s i o n a l r o l e s were offered to improve t h i s s i t u a t i o n . As well, findings indicated that there was a need for p a l l i a t i v e care service e i t h e r i n the form of a team or separate unit, or simply the p r a c t i c i n g of the p a l l i a t i v e care philosophy. TABLE OF CONTENTS T i t l e Page A b s t r a c t T a b l e o f C o n t e n t s Acknowledgements D e d i c a t i o n v m . i x . 11. i v . 1. C h a p t e r One - I n t r o d u c t i o n 1. D e s c r i p t i o n o f P r o b l e m A r e a a) U n d e r l y i n g V a l u e s Towards Death i n our S o c i e t y b) The I n s t i t u t i o n a l i z a t i o n o f t h e D y i n g c) P r o f e s s i o n a l A t t i t u d e s towards t h e D y i n g , t h e E l d e r l y , and t h e M e n t a l l y 111 2. What i s P a l l i a t i v e Care? 3. The P a l l i a t i v e / H o s p i c e Care Movement a) The S o c i a l Movement b) P a l l i a t i v e Care i n Canada c) P a l l i a t i v e Care and t h e H e a l t h Care System 4. P r o b l e m D e f i n i t i o n : P a l l i a t i v e Care and R i v e r v i e w H o s p i t a l 5. Key F a c t o r s R e l a t e d t o T h e r a p e u t i c Care o f t h e D y i n g 6. E t h i c a l I s s u e s A r i s i n g i n P a l l i a t i v e Care 7. P a l l i a t i v e Care and S o c i a l Work 8. Summary and O r g a n i z a t i o n o f t h e R e s e a r c h R e p o r t C h a p t e r Two - The L i t e r a t u r e Review 1. I n t r o d u c t i o n 2. C o n c e p t u a l Framework and As s u m p t i o n 3. F a c t o r One: P e r s o n a l and P r o f e s s i o n a l A n x i e t y o f Death 1 2 5 9 13 18 20 24 30 34 35 39 4. F a c t o r Two: The O r g a n i z a t i o n a l C o n t e x t o f t h e H o s p i t a l System 65 5. F a c t o r Three: E x p e c t a t i o n s o f P r o f e s s i o n a l R o l e s 68 6. F a c t o r F o u r : Teamwork 72 7. F a c t o r F i v e : E d u c a t i o n and T r a i n i n g i n C a r i n g f o r t h e D y i n g 81 8. F a c t o r S i x : C o n v e y i n g and E x c h a n g i n g I n f o r m a t i o n 88 9. Summary 96 C h a p t e r Three - R e s e a r c h D e s i g n 1. L e v e l o f D e s i g n 99 2. C h o i c e o f M e t h o d o l o g i c a l O r i e n t a t i o n 102 3. S a m p l i n g D e s i g n 104 4. Data C o l l e c t i o n 106 a) P r o c e d u r e f o r Data C o l l e c t i o n b) Advantages and D i s a d v a n t a g e s o f W r i t t e n Q u e s t i o n n a i r e Survey 107 5. The Measure 108 a) C o n s t r u c t i o n o f t h e Measure b) R e l i a b i l i t y and V a l i d i t y o f t h e I n s t r u m e n t 112 6. Data A n a l y s i s 112 7. E t h i c a l I s s u e s i n t h e R e s e a r c h 113 8. Problems E n c o u n t e r e d i n t h e R e s e a r c h 115 9. Summary 117 C h a p t e r Four - R e s u l t s 118 1. I n t r o d u c t i o n 118 2. Demographic D e s c r i p t i o n o f Respondents 118 v 3. S e c t i o n One: Death A n x i e t y S c a l e (DAS) 120 a) O v e r a l l s c o r e s 120 b) DAS by P r o f e s s i o n 121 c) DAS by Gender 121 d) DAS by Age 122 e) DAS by M a r i t a l S t a t u s 122 f) DAS by L e n g t h o f Work E x p e r i e n c e 122 4. S e c t i o n Two: L i f e , Work, and E d u c a t i o n a l E x p e r i e n c e 123 a) Death o f Someone C l o s e 123 b) Work w i t h D y i n g P a t i e n t s as a S t u d e n t 124 c) Work w i t h D y i n g P a t i e n t s as a P r o f e s s i o n a l 124 d) C u r r e n t l y Working w i t h D y i n g P a t i e n t s 125 e) F o r m a l E d u c a t i o n E x p e r i e n c e 125 f) I n f o r m a l E d u c a t i o n E x p e r i e n c e 12 6 g) Competence and/or C o n f i d e n c e i n Work w i t h D y i n g P a t i e n t s 127 5. S e c t i o n Three: P e r c e p t i o n o f P r a c t i c e 128 a) O r g a n i z a t i o n a l S t r u c t u r e o f t h e H o s p i t a l System 128 b) R o l e E x p e c t a t i o n s o f P r o f e s s i o n a l s 132 c) Teamwork Amongst P r o f e s s i o n a l s 133 d) Exchange and Communication o f D i a g n o s t i c I n f o r m a t i o n 134 e) Q u a l i t a t i v e A n a l y s i s f o r Open-ended Q u e s t i o n s 136 6. Summary and C o n c l u s i o n s 142 C h a p t e r F i v e - D i s c u s s i o n o f R e s u l t s and C o n c l u s i o n s 1. I n t r o d u c t i o n 146 2. S e c t i o n One: Death A n x i e t y S c a l e (DAS) 147 3. S e c t i o n Two: L i f e , Work, and E d u c a t i o n a l E x p e r i e n c e 152 4. S e c t i o n Three: P e r c e p t i o n s o f P r a c t i c e a) O r g a n i z a t i o n a l C o n t e x t o f t h e H o s p i t a l 157 b) R o l e E x p e c t a t i o n s 169 c) Teamwork 173 d) Exchange and Communication o f D i a g n o s t i c I n f o r m a t i o n 176 e) D i s c u s s i o n o f Q u a l i t a t i v e A n a l y s i s 180 v i Conclusion 187 Bibliography 204 Appendices Appendix A. Appendix B. Appendix C. Appendix D. Appendix E. Appendix F, Operational D e f i n i t i o n s of Professionals Represented i n the Sample P i l o t Study Research P i l o t Study Questionnaire and Covering Letter Thesis Research Questionnaire and Covering Letter Follow-up Letter for Written Questionnaire Letters of Approval to Conduct Research 213 216 235 241 249 v i i ACKNOWLEDGEMENTS There a r e many p e o p l e who have had a p a r t t o p l a y i n t h i s t h e s i s p r o j e c t . F i r s t , I would l i k e t o t h a n k t h e p e o p l e o f R i v e r v i e w H o s p i t a l who made i t e a s i e r t o g e t t h e r e s e a r c h done - John Fox, J i m F l o d i n , and Dr. Stephen H o l l i d a y . Thanks a l s o t o t h e o t h e r S o c i a l Work Department s u p e r v i s o r s and a l l o f t h e f r o n t l i n e w o r k ers who p a r t i c i p a t e d . A s p e c i a l t h a n k s i s e x t e n d e d t o my f i e l d placement s u p e r v i s o r s , A l v a Wu and R e t t a Chan, f o r t h e i r i n v a l u a b l e t e a c h i n g , p a t i e n c e , and s u p p o r t . I would l i k e t o thank Dr. P a u l e M c N i c o l l and Dr. Mary R u s s e l l a t t h e U.B.C. S c h o o l o f S o c i a l Work f o r t h e i r knowledge and g u i d a n c e i n t h i s endeavour. I t has been w o n d e r f u l t o have been a s s o c i a t e d w i t h you b o t h d u r i n g my t i m e a t t h e Graham House. And f i n a l l y , I would l i k e t o t h a n k S o n j a f o r h e r s t r e n g t h , warmth, and m o t h e r l y c a r i n g , and f o r j u s t b e i n g t h e r e as she i s . v i i i DEDICATION To those people who have shared with me the g i f t of l i f e i n the midst of death. Their lessons of courage, strength, and di g n i t y w i l l always be remembered. May they be i n a kinder, gentler place, and may I never forget that dying i s something that does not have to be done alone. C. ix CHAPTER ONE I n t r o d u c t i o n A p p r o x i m a t e l y 70% o f Canadians now d i e i n i n s t i t u t i o n s and n o t a t home w i t h t h e i r f a m i l i e s (Mount, 1978) . Deaths o c c u r i n a c u t e c a r e h o s p i t a l s , e x t e n d e d c a r e f a c i l i t i e s , o r i n s i m i l a r i n s t i t u t i o n s such as m e n t a l i n s t i t u t i o n s . About 80% of t h e s e p e o p l e w i l l be o v e r t h e age o f 65, and more o f t e n t h a n n o t , d e a t h w i l l r e s u l t from a p r o l o n g e d c h r o n i c d i s e a s e r a t h e r t h a n from a q u i c k l y t e r m i n a t i n g a c u t e i l l n e s s (Vernon & L o v e l e s s , 1984). Thus, t h e most common scene f o r d e a t h has s h i f t e d from t h e home t o t h e i n s t i t u t i o n , j u s t as t h e more common age o f d e a t h has s h i f t e d from t h e younger t o t h e o l d e r age group (Brim e t a l . , 1970). T h i s phenomenon now poses an i n t e r e s t i n g c h a l l e n g e t o our h e a l t h c a r e system, as i t a t t e m p t s t o i n c o r p o r a t e a p p r o p r i a t e p r a c t i c e s and p o l i c i e s t o d e a l w i t h t h e i s s u e . On a l a r g e r n o t e , i t poses a p r o b l e m f o r t h e s o c i a l and c u l t u r a l c o n t e x t o f s o c i e t y as we s t r u g g l e t o b r i n g s e n s i t i v e humane c a r e t o t h e t e r m i n a l l y i l l . One might assume t h a t t h e b u r g e o n i n g o f a r t i c l e s and books on t h e i s s u e of d e a t h and d y i n g s i g n i f i e s t h a t p a l l i a t i v e c a r e i s a s a l i e n t i s s u e i n c u r r e n t m e d i c a l p r a c t i c e . However, t h e c r i t i c a l i s s u e remains one o f i n t e g r a t i n g t h e knowledge i n t o a c t u a l c a r e s i t u a t i o n s , so t h a t i t does not remain o u t s i d e o f mainstream m e d i c a l p r a c t i c e . "Without t h e i n t e g r a t i o n o f t h e 1 2 knowledge i n t o an approach, t h e r e i s t h e danger t h a t t h e t o p i c and i t s many r a m i f i c a t i o n s w i l l become l i k e t h e d y i n g p e r s o n -o f t e n i s o l a t e d and s e t a p a r t on t h e p e r i p h e r y o f c a r e " ( B a r t o n , 1977, p . 3 ) . In t h i s c h a p t e r we w i l l l o o k more c l o s e l y a t t h e d y i n g s i t u a t i o n i n our s o c i e t y , e s p e c i a l l y as i t p e r t a i n s t o t h e e l d e r l y , and more s p e c i f i c a l l y t h e m e n t a l l y i l l e l d e r l y i n a m e n t a l i n s t i t u t i o n . We w i l l examine v a r i o u s r e a s o n s as t o why we have moved t o i n s t i t u t i o n a l i z e t h e d y i n g and t h e r a m i f i c a t i o n s o f t h i s move. We w i l l t h e n l o o k a t one p o s s i b l e r e s p o n s e t o t h i s phenomenon, namely p a l l i a t i v e c a r e . The conc e p t o f p a l l i a t i v e c a r e w i l l be d e f i n e d , as w e l l as i t s h i s t o r i c a l r o o t s i n Canada and development i n t o a s o c i a l movement and i n t e g r a t i o n i n t o our h e a l t h c a r e system. F i n a l l y , we w i l l d i s c u s s t h e r o l e t h a t s o c i a l work can p l a y i n p a l l i a t i v e c a r e . a) U n d e r l y i n g V a l u e s Towards Death i n our S o c i e t y G u e r r a (1984) a s s e r t s t h a t a t t i t u d e s t o w a r d d e a t h have e v o l v e d t h r o u g h f i v e s t a g e s i n t h e l a s t m i l l e n n i u m . He d e s c r i b e s t h e f i r s t s t a g e , "We A l l D i e " , as a t i m e where c o n c e r n s f o r t h e i n d i v i d u a l who was d y i n g as b e i n g s e c o n d a r y t o t h e good o f t h e f a m i l y and o f s o c i e t y . T h i s g e n e r a l a t t i t u d e l a s t e d i n t o t h e n i n t h c e n t u r y . The n e x t s t a g e i s d e s c r i b e d as "Death o f S e l f " . "Here t h e f o c u s s h i f t e d from 3 t h e deathbed t o t h e f u n e r a l , w i t h t h e s a l v a t i o n o f t h e i n d i v i d u a l and t h e s u r v i v a l o f t h e i m m o r t a l s o u l t a k e n as t h e g r e a t e s t c o n c e r n s " (Guerra, 1984, p . 1 3 ) . T h i s a t t i t u d e p r e v a i l e d i n t h e e l e v e n t h t h r o u g h t h e t h i r t e e n t h c e n t u r i e s . The t h i r d s t a g e , " P r o t r a c t e d and Imminent Death", f o c u s e d on t h e "savage and untamed power o f d e a t h " as humanity was h o r r i f y i n g l y s c o u r g e d . "Thy Death" f o l l o w e d t h i s s t a g e i n t h e e i g h t e e n t h c e n t u r y . D u r i n g t h i s p e r i o d t h e r e was a d e c l i n e i n t h e use o f r i t u a l as a way o f a v o i d i n g d e a t h ' s r e a l i t y , and an i n c r e a s e i n e x p r e s s i o n o f g r i e f , as d e a t h was a c c e p t e d as a g r e a t p e r s o n a l l o s s . The f i n a l s t a g e , a t w e n t i e t h c e n t u r y phenomenon i s " I n v e r t e d Death", w h i c h i s c h a r a c t e r i z e d by t h e r e l e g a t i o n o f d e a t h t o m e d i c a l t e c h n o l o g y . "The d y i n g a r e t o be d e a l t w i t h and d i s p o s e d o f i n as e f f i c i e n t and n o n t r a u m a t i c a manner as p o s s i b l e " (Guerra, 1984, p . 1 3 ) . Indeed, our s o c i e t y has c r e a t e d a " v a r i e t y o f d e a t h s p e c i a l i s t s f o r d e a l i n g w i t h a l l a s p e c t s o f d y i n g - h o s p i t a l s t o house t h e c r i t i c a l l y i l l , m o r t i c i a n s t o h a n d l e t h e p r e p a r a t i o n o f t h e body f o r b u r i a l , and f u n e r a l d i r e c t o r s t o d e a l w i t h t h e d e t a i l s o f b u r i a l " ( C a r t e r & M c G o l d r i c k , 1989, p.457) . As a r e s u l t o f t h e i n t e r v e n t i o n o f a l l t h e s e i n d i v i d u a l s , t h e f a m i l y i s d i s t a n c e d from t h e d y i n g i n d i v i d u a l . I t must be n o t e d , however, t h a t t h e r i t u a l s around d e a t h and t h e d i s p o s i t i o n o f d e a t h a r e b e i n g changed o r e l i m i n a t e d by some of t h e younger s e c t o r s o f our s o c i e t y as a r e a c t i o n t o t h i s 4 d i s t a n c i n g . F o r example, t h e t r a d i t i o n a l r i t u a l s f o r f u n e r a l s and b u r i a l a r e c h a n g i n g . The s o c i e t y we now l i v e i n has been d e s c r i b e d as b e i n g d e a t h d e n y i n g and age d e f y i n g ( C a r p e n t e r , 1984). We a r e u n c o m f o r t a b l e and a f r a i d o f d e a t h even though i t i s an i n e v i t a b l e and r e a l p a r t o f l i f e . R e g a r d l e s s o f age, t h e m a j o r i t y o f p e o p l e d e a l w i t h d e a t h by d e n y i n g i t . F o r most o f us, d e a t h i s c o n s i d e r e d t o be an i n v a d e r and not a n a t u r a l e n d i n g t o l i f e . Death i s u s u a l l y a s s o c i a t e d w i t h o l d age so o l d age i s o f t e n d e n i e d a l s o (even though t h e a l t e r n a t i v e t o g r o w i n g o l d i s t o d i e young). "The f a c t t h a t most d y i n g i s done by t h e e l d e r l y and t h e e l d e r l y t e n d t o l i v e on t h e p e r i p h e r y o f s o c i e t y , means t h a t d e a t h i t s e l f t e n d s t o be more h i d d e n " (Thompson, 1979, p . x v i . ) . T h i s o b s c u r i t y o f d e a t h has c o n t r i b u t e d t o t h e ' c o n s p i r a c y o f s i l e n c e ' about d e a t h i n our s o c i e t y . T h i s s o c i e t a l d e n i a l has i m p o r t a n t i m p l i c a t i o n s not o n l y f o r t r e a t m e n t but f o r t h e impact o f d y i n g on t h e f a m i l y . The modern a t t i t u d e t o w a r d d e a t h appears t o have r e s u l t e d from f a m i l y and s o c i e t y a t t e m p t i n g t o p r o t e c t t h e m s e l v e s from t h e e f f e c t s o f h a v i n g t o c o n t e m p l a t e t h e d e a t h o f a l o v e d one. "Perhaps i n t h e attempt t o p r o t e c t i t s e l f from t h e s o c i o e m o t i o n a l d i s r u p t i o n o c c a s i o n e d by d y i n g , s o c i e t y t r i e s t o b u r y i t " ( C a r p e n t e r , 1984, p . 2 7 ) . The consequent tendency t o hand o v e r r e s p o n s i b i l i t y t o t h e h o s p i t a l , t o m e d i c a l i z e t h e problem, i s t h e i n e v i t a b l e r e s u l t o f t r e a t i n g d e a t h as 5 somet h i n g t h r e a t e n i n g and f o r b i d d e n . D e s p i t e t h e t r e n d i n r e c e n t y e a r s towards more community h e a l t h c a r e and p r e v e n t i o n programs, and towards d e i n s t i t u t i o n a l i z a t i o n , s o c i e t y i s s t i l l f o r t h e most p a r t d e l e g a t i n g t h e r e s p o n s i b i l i t y o f t e r m i n a l c a r e t o t h e i n s t i t u t i o n a l s e t t i n g . W i t h t h i s development, t h e r e s p o n s i b i l i t y f o r t e r m i n a l c a r e has been a b r o g a t e d t o t h e p r o f e s s i o n a l s . I n our t e c h n o l o g i c a l s o c i e t y , f a m i l i e s have become more dependent on t h e h e a l t h c a r e p r o f e s s i o n a l f o r t h e c a r e o f t h e e l d e r l y and d y i n g . T h i s dependency has had t h e r e s u l t o f d i s c o u r a g i n g c r i t i c a l e x a m i n a t i o n o f t h e i r r o l e s and r e s p o n s i b i l i t i e s i n t h i s f i e l d . The r e s p o n s i b i l i t i e s o f t h e h e a l t h c a r e p r o f e s s i o n a l a r e t o t h e d y i n g i n d i v i d u a l , t h e f a m i l y , and t o t h e i n t e g r i t y o f t h e p r o f e s s i o n and i n s t i t u t i o n . On a more p o s i t i v e n o t e , i t might be s u g g e s t e d t h a t we a r e perhaps e n t e r i n g a s i x t h s t a g e o f a t t i t u d e s about d e a t h and d y i n g i n our s o c i e t y . We a r e b e g i n n i n g t o e x p e r i e n c e a s h i f t away from t h e s t r i c t l y s c i e n t i f i c v i e w o f h e a l t h c a r e p h i l o s o p h y t o a more humane view. T h i s s h i f t i n f o c u s has been accompanied by a s h i f t i n s e r v i c e s a v a i l a b l e t o t h e s e r i o u s l y and t e r m i n a l l y i l l . T h i s s o c i a l movement w i l l be e x p l o r e d i n l a t e r s e c t i o n s o f t h e C h a p t e r . b) The I n s t i t u t i o n a l i z a t i o n o f t h e D y i n g 6 "Dying i s r a p i d l y becoming an i n s t i t u t i o n a l i z e d p r o c e s s " ( B a r t o n , 1977, p . 3 ) . The d y i n g p r o c e s s has moved t o w a r d t h e i n s t i t u t i o n a l s e t t i n g because o f i m p o r t a n t changes i n our s o c i e t y . The s o c i e t y o f t o d a y i s h i g h l y u r b a n i z e d , i n d u s t r i a l i z e d , and m o b i l e . C a l v i n G o l d s c h n e i d e r (1971) p o i n t s out t h a t i n t h e change from a p r e i n d u s t r i a l t o an i n d u s t r i a l s o c i e t y , we have gone from u n c o n t r o l l e d t o c o n t r o l l e d m o r t a l i t y ( c i t e d i n B a c k e r e t a l . , 1982) . W i t h our c o n t r o l o v e r m o r t a l i t y and our b e l i e f t h a t d e a t h can be " c u r e d " , d y i n g has become i n s t i t u t i o n a l i z e d . More and more h o s p i t a l s have become d e s i g n e d and o r g a n i z e d f o r t h e purpose o f c o n t r o l l i n g d e a t h . M o d i f i c a t i o n s i n f a m i l y s t r u c t u r e , as w e l l , have had an i m p o r t a n t i n f l u e n c e on t h e c a r e o f t h e c h r o n i c a l l y and s e r i o u s l y i l l . The e x t e n d e d f a m i l y s t r u c t u r e o f t h e p a s t has g i v e n way t o new forms o f f a m i l y s t r u c t u r e s t h a t a r e s m a l l e r and more i s o l a t e d . These f a m i l y s t r u c t u r e s w i t h g r e a t e r m o b i l i t y and l e s s s t a b i l i t y a r e l e s s a b l e t o p r o v i d e s u p p o r t and c a r e when one o f t h e i r members i s s i c k , and must r e l y on o u t s i d e s u p p o r t . N a t u r a l l y , t h i s s u p p o r t i s drawn from t h e w i d e r community such as v a r i o u s s o c i a l a g e n c i e s and i n s t i t u t i o n s . The c h a n g i n g r o l e o f women i n our s o c i e t y has e s p e c i a l l y i n f l u e n c e d f a m i l i e s ' r e a c t i o n t o t e r m i n a l i l l n e s s and t o t h e t r e a t m e n t o f d e a t h . C a r t e r and M c G o l d r i c k (1989) e x p l a i n 7 t h a t , h i s t o r i c a l l y , women have c a r e d f o r t h e i l l and d y i n g members o f t h e i r f a m i l y and s o c i e t y . There has been a s h i f t i n t h e s o c i a l and p o l i t i c a l c o n t e x t o f our s o c i e t y , e s p e c i a l l y w i t h t h e f e m i n i s t movement and t h e r i s e i n c o s t o f l i v i n g . Women a r e h a v i n g fewer c h i l d r e n and a r e w a i t i n g l o n g e r t o have them, and more and more women a r e e n t e r i n g t h e w o r k f o r c e . Yet even w i t h t h i s change o f f a m i l y r o l e , women a r e s t i l l t i e d c l o s e l y t o t h e c a r e t a k i n g o f t h e i l l . However, i t i s becoming more d i f f i c u l t as women r a i s e t h e i r own c h i l d r e n , c a r e f o r a g i n g p a r e n t s , and h o l d down j o b s . A c c o r d i n g t o Newsweek Magazine, more t h a n h a l f t h e women who c a r e f o r e l d e r l y r e l a t i v e s a l s o work o u t s i d e t h e home, and n e a r l y 40 p e r c e n t a r e s t i l l r a i s i n g c h i l d r e n o f t h e i r own (Beck e t a l . , 1990). As t h e p r e s s u r e s o f t h e c a r e t a k i n g j o b s women t a k e on become t o o g r e a t , r e l i a n c e on t h e h e a l t h c a r e system and i t s i n s t i t u t i o n s may t a k e p l a c e but a t g r e a t p s y c h o l o g i c a l and e m o t i o n a l c o s t . Advances i n m e d i c i n e i n t h i s c e n t u r y have d i r e c t l y r e s u l t e d a l s o i n t h e i n s t i t u t i o n a l i z a t i o n o f t h e d y i n g . The advances i n t e c h n o l o g y and d i a g n o s t i c p r o c e d u r e s have a l l i m p a c t e d t h e n a t u r e o f our h e a l t h c a r e system and i t s d e l i v e r y o f s e r v i c e s . The s e t t i n g i n which t h e advanced c a r e can be r e c e i v e d i s t h e h o s p i t a l . Thus, t h i s i s where t h e r e i s a tend e n c y t o p l a c e a l l - s e v e r e l y i l l p e o p l e . However, t h e h o s p i t a l has i t s e l f d e v e l o p e d i n t o a complex s o c i a l 8 i n s t i t u t i o n . The b e n e f i t s o f t h e t e c h n o l o g i c a l l y s o p h i s t i c a t e d m e d i c a l c a r e have been r e m a r k a b l e . Many d i s e a s e s and d i s a b l i n g c o n d i t i o n s have been improved i n t h e i r p o t e n t i a l f o r c u r e . U n f o r t u n a t e l y , i t may be a r g u e d t h a t w i t h t h e pronounced emphasis on c u r e and mas t e r y o v e r d i s e a s e , t h e p r o v i s i o n o f s u p p o r t i v e p a l l i a t i v e c a r e f o r t h e i n c u r a b l e has s u f f e r e d . Our a b i l i t y t o p r o l o n g l i f e i s c o u n t e r b a l a n c e d by t h e p r o l o n g a t i o n o f t h e d y i n g p r o c e s s . As m e d i c i n e grows more s c i e n t i f i c and s o p h i s t i c a t e d , more knowledge o f t h e causes o f d e a t h i s g a i n e d . However, t h e n e x t l o g i c a l s t e p i s t h e n t o f i n d ways t o a v e r t t h e d i s e a s e , and t h e r e f o r e d e a t h . Thus, t h e ' n a t u r a l ' l i n k between d y i n g and m e d i c i n e i s s t r e n g t h e n e d . There i s a ten d e n c y t o " b i o l o g i z e " t h e human b e i n g , t h u s c e s s a t i o n o f personhood becomes eq u a t e d w i t h t h e b i o l o g i c a l running-down o f t h e body ( R o l l i n , 1984). D y i n g does i n v o l v e b i o l o g i c a l f a c t o r s , t h e r e i s no d e n y i n g t h a t , b u t i t i s much b r o a d e r i n scope. Death i s as much a s o c i a l c o n s t r u c t as i t i s a p h y s i o l o g i c a l e v e n t . I n e f f e c t , h o s p i t a l s end up d e n y i n g t h e s o c i a l e x i s t e n c e o f t h e i n d i v i d u a l . D y i n g i n a h o s p i t a l t e n d s t o be a r e s t r i c t i v e and i m p e r s o n a l e x p e r i e n c e , as compared t o d y i n g a t home. A p e r s o n a b l e t o d i e i n h i s o r h e r own home w i l l be s u r r o u n d e d by f a m i l i a r o b j e c t s and l o v e d f a c e s . Thus, t h e f a m i l i a r i t y o f home can t o some e x t e n t narrow t h e g u l f between l i f e and d e a t h . 9 The e x p a n d i n g t e c h n o l o g y has a l s o l e d t o i n c r e a s e d s p e c i a l i z a t i o n o f t h e p r o f e s s i o n a l s . A l t h o u g h t h e p o s i t i v e outcomes o f t h i s development a r e o b v i o u s , s p e c i a l i z a t i o n can a l s o l e a d t o l e s s c o n t i n u i t y o f c a r e f o r t h e p a t i e n t , as c a r e can be p r o v i d e d by a l a r g e v a r i e t y o f p e o p l e . T h e r a p e u t i c , i n t e r p e r s o n a l r e l a t i o n s h i p s between t h e c a r e g i v e r and t h e p a t i e n t t h a t may have e x i s t e d w i t h l e s s s p e c i a l i z a t i o n , appear now t o have d e t e r i o r a t e d ( B a r t o n , 1977) . The move t o w a r d more t e c h n o l o g y has r e s u l t e d i n l e s s c o n c e r n w i t h t h e p s y c h o s o c i a l c a r e and e m o t i o n a l s u p p o r t o f t h e p a t i e n t . The c u r r e n t s t a t e o f t h e economics o f h e a l t h c a r e a l s o a f f e c t t h e c a r e o f t h e t e r m i n a l l y i l l . The c u r r e n t t h r u s t i n t h e economics o f h e a l t h c a r e , i s o f c o u r s e , c o s t c o n t a i n m e n t . H e a l t h c a r e p r o v i d e r s a r e r e i m b u r s e d a c c o r d i n g t o f e e s c h e d u l e s f o r s p e c i f i c p r o c e d u r e s t h a t a r e done and not f o r g e n e r a l t y p e s o f c a r e o r p r e v e n t i v e s e r v i c e s s uch as p a l l i a t i v e c a r e . Thus, t h e p s y c h o s o c i a l d i m e n s i o n s o f p a t i e n t c a r e and t h e c o n c e r n w i t h p a t i e n t c o m f o r t and s u p p o r t o f f a m i l y may become secondary t o e f f i c i e n c y and c o s t -e f f e c t i v e n e s s because t h e s e s e r v i c e s do not f a l l w i t h i n t h e f e e s c h e d u l e . c) P r o f e s s i o n a l A t t i t u d e s Towards t h e D y i n g , t h e E l d e r l y , and t h e M e n t a l l y 111 • I n our s o c i e t y , t h e d y i n g , t h e e l d e r l y , and t h e m e n t a l l y 10 i l l a r e o f t e n a f f o r d e d l i t t l e s o c i a l v a l u e , and t h e a t t i t u d e s t o wards t h e s e p o p u l a t i o n s t e n d t o be r e l a t i v e l y n e g a t i v e . I t may f o l l o w t h a t p r o f e s s i o n a l a t t i t u d e s t owards t h e s e groups w i l l r e f l e c t s o c i e t a l a t t i t u d e s . Indeed, a s t u d y by S t o c k w e l l (1972) showed t h a t t h e e l d e r l y , t h e d y i n g and t h e m e n t a l l y i l l were v i e w e d by n u r s i n g s t a f f t o be t h e most u n p o p u l a r p a t i e n t s and t h e r e was a measurable d i f f e r e n c e i n t h e q u a l i t y o f c a r e t h e y r e c e i v e d . T h e r e f o r e , i t might be assumed t h a t i f a p e r s o n i s e l d e r l y , d y i n g , and a l s o s u f f e r i n g from a m e n t a l i l l n e s s , t h e a t t i t u d e s d i r e c t e d a t him o r h e r might v e r y w e l l be n e g a t i v e i n n a t u r e . P r o f e s s i o n a l s , i n g e n e r a l , do not seem t o l i k e w o r k i n g w i t h e l d e r l y p o p u l a t i o n s . Many p r e f e r not t o work w i t h e l d e r l y c l i e n t s because t h e y a r e r e g a r d e d as u n c h a l l e n g i n g , b o r i n g , and u n r e w a r d i n g . Even i f e l d e r l y c l i e n t s a r e not d y i n g t h e y t e n d t o be t r e a t e d as i f t h e y a r e . " L i k e t h e d y i n g , t h e i r problems a r e p o p u l a r l y seen as i n c u r a b l e , i r r e v e r s i b l e , and i n e v i t a b l e " ( S i l v e r s t o n e , 1984, p . 3 ) . M e d i c a l s t a f f i n a sense " w r i t e o f f " t h e d y i n g e l d e r l y w i t h t h e t a c i t s a n c t i o n o f s o c i e t y . Nurses have been t i m e d as r e s p o n d i n g c o n s i d e r a b l y more s l o w l y t o t h e c a l l s from e l d e r l y p a t i e n t s t h a n from younger n o n - t e r m i n a l p a t i e n t s ( R o l l i n , 1984) . These p r a c t i c e s d emonstrate t h a t t h e d i f f e r i n g e x p e c t a t i o n s w i t h r e s p e c t t o t h e c o u r s e o f t h e i l l n e s s and t h e r e s u l t s , a r e o f t e n dependent on t h e n a t u r e and e x t e n t o f s o c i a l v a l u e a f f o r d e d t o t h e p e r s o n b e i n g s e r v e d . The d y i n g 11 e l d e r l y p e r s o n f u r t h e r s e r v e s as a c o n s t a n t r e m i n d e r o f m e d i c i n e ' s u l t i m a t e f a i l u r e . I n c o n t r a s t i n g t h e abundance o f p e d i a t r i c i a n s w i t h t h e l a c k o f s p e c i a l i s t s i n g e r i a t r i c s , i t has been s u g g e s t e d as a p r o b a b l e r e a s o n f o r such d i s p a r i t y , t h a t whatever t h e d o c t o r does f o r c h i l d r e n t h e y g e n e r a l l y r e c o v e r , whereas whatever i s done f o r t h e aged a l l o f them e v e n t u a l l y succumb (Worc e s t e r , 1977, p . 3 ) . T h i s n e g a t i v e v i e w o f t h e e l d e r l y i s u n f o r t u n a t e because many of t h e problems t h e y have a r e r e v e r s i b l e , o r a t t h e v e r y l e a s t can be a m e l i o r a t e d . E l d e r l y p e o p l e have j u s t as much c a p a c i t y t o change and grow p s y c h o l o g i c a l l y and s p i r i t u a l l y i n t h e i r r e m a i n i n g y e a r s as someone a t a n o t h e r d e v e l o p m e n t a l s t a g e . The p r o f e s s i o n a l s a s s o c i a t e d w i t h t h e v a r i o u s i n s t i t u t i o n s i n whi c h p e o p l e d i e w i l l be i n v o l v e d i n t h e d e a t h o f many o f t h e aged. I t would be n a i v e t o assume t h a t t h e meaning o l d age has f o r t h e s e p e o p l e would n ot i n f l u e n c e how t h e y r e l a t e t o and t r e a t t h e o l d e r p e r s o n who i s d y i n g . I n c a r i n g f o r t h e d y i n g e l d e r l y p e r s o n , t h e h e a l t h c a r e p r o f e s s i o n a l w i l l e x p e r i e n c e t h e f u l l range o f human emotions and a t t i t u d e s t h a t any normal human w i l l e x p e r i e n c e . O f t e n t h e n , t h e y w i l l use c o p i n g s t r a t e g i e s and d e f e n s i v e manoeuvers t o a l l o w t h e i r work t o c o n t i n u e u n h i n d e r e d . U n f o r t u n a t e l y , a method o f t e n used i s t o d e p e r s o n a l i z e t h e d y i n g i n d i v i d u a l . I s t h e r e a s o n f o r t h i s i n c r e a s i n g l y m e c h a n i c a l d e p e r s o n a l i z e d approach our own d e f e n s i v e n e s s ? I s t h i s approach our own way t o cope w i t h and r e p r e s s t h e a n x i e t i e s t h a t a t e r m i n a l l y o r c r i t i c a l l y i l l p a t i e n t evokes i n us? I s our c o n c e n t r a t i o n on equipment, on b l o o d p r e s s u r e , our d e s p e r a t e a ttempt t o deny t h e impending d e a t h w h i c h i s so f r i g h t e n i n g and d i s c o m f o r t i n g t o us t h a t we d i s p l a c e a l l our knowledge onto machines, s i n c e t h e y a r e l e s s c l o s e t o us t h a n t h e s u f f e r i n g f a c e o f a n o t h e r human b e i n g w h i c h would remind us once more o f our l a c k o f omnipotence, our own l i m i t s and f a i l u r e s , and l a s t b u t n o t l e a s t perhaps our own m o r t a l i t y ? ( K u b l e r - R o s s , 1969, p . 9 ) . As K u b l e r - R o s s n o t e s , c o n s t a n t l y f a c i n g t h e d e a t h o f o t h e r s a l s o means t h a t one has t o c o n t e m p l a t e h i s / h e r own m o r t a l i t y . As h e a l t h c a r e p r o f e s s i o n a l s , we need t o l e a r n t o communicate w i t h each o t h e r about our own f e a r s o f d e a t h as w e l l as t h e d i f f i c u l t i e s o f w o r k i n g w i t h d y i n g i n d i v i d u a l s . The s i t u a t i o n i s f u r t h e r c o m p l i c a t e d when d e a l i n g w i t h t h e d y i n g e l d e r l y p e r s o n s u f f e r i n g from m e n t a l i l l n e s s i n a p s y c h i a t r i c i n s t i t u t i o n . The me n t a l i l l n e s s i t s e l f p r o v i d e s a s t r o n g a l i b i f o r p r o f e s s i o n a l s and f a m i l i e s t o a v o i d d e a l i n g w i t h t h e t e r m i n a l i l l n e s s i n an open manner. Perhaps t h e r e i s an a s s u m p t i o n made t h a t d i s c u s s i o n about t h e i l l n e s s w i t h 13 p a t i e n t s w i l l o n l y u p s e t them f u r t h e r because t h e y a r e not e m o t i o n a l l y s t a b l e enough t o i n t e g r a t e t h e i n f o r m a t i o n , o r c o n v e r s e l y , t h a t t h e p a t i e n t s would not u n d e r s t a n d a t a l l t h e meaning o f d e a t h . Can we e t h i c a l l y deny t o d y i n g p e r s o n s i n f o r m a t i o n t h a t would p r o v i d e them w i t h an o p p o r t u n i t y t o make peace w i t h t h e m s e l v e s and t h e i r f a m i l y , and t o c o n t r o l t h e manner i n w h i c h t h e y would l i k e t o d i e ? The n a t u r e o f t h e m e n t a l i l l n e s s i t s e l f may have i m p o r t a n t i m p l i c a t i o n s f o r i n v o l v e m e n t i n t e r m i n a l c a r e . What a r e t h e s p e c i f i c needs o f t h i s p o p u l a t i o n as t h e y undergo t h e d y i n g p r o c e s s ? To what e x t e n t a r e t h e y b e i n g met, and what more do we need t o l e a r n b e f o r e we can p r o p e r l y and a p p r o p r i a t e l y meet t h o s e needs? We need t o s e r i o u s l y ask o u r s e l v e s what i t means t o be o l d , m e n t a l l y i l l and d y i n g . 2. WHAT IS PALLIATIVE CARE? One o f t h e most r a p i d l y g r o w i n g t r e n d s i n t e r m i n a l c a r e i s t h e c oncept of p a l l i a t i v e c a r e . P a l l i a t i v e c a r e o r h o s p i c e c a r e r e f e r s t o a p h i l o s o p h y o f c a r e . P a l l i a t i v e c a r e comes from t h e L a t i n word " p a l l i u m " , meaning " t o a l l e v i a t e w i t h o u t c u r i n g " ( H o l t , 1989, p . 1 3 ) . S e v e r a l f e a t u r e s c h a r a c t e r i z e p a l l i a t i v e c a r e as b e i n g d i s t i n c t from o t h e r t r a d i t i o n a l h e a l t h c a r e models. The Subgroup on P a l l i a t i v e Care S e r v i c e s i n H o s p i t a l s , an a f f i l i a t i o n o f t h e f e d e r a l / p r o v i n c i a l Working Group on S p e c i a l S e r v i c e s i n H o s p i t a l s , d e f i n e d p a l l i a t i v e c a r e as f o l l o w s : ' P a l l i a t i v e c a r e ' r e f e r s t o programs o r s e r v i c e s t h a t p r o v i d e c a r e t o t h o s e p a t i e n t s f o r whom t r e a t m e n t aimed a t c u r e and p r o l o n g a t i o n o f l i f e i s no l o n g e r a p p r o p r i a t e but f o r whom t h e r a p y aimed a t i m p r o v i n g t h e q u a l i t y o f t h e r e m a i n i n g l i f e i s t h e p r i m a r y o b j e c t i v e . P a l l i a t i v e Care o f f e r s t h e r a p e u t i c s e r v i c e s d e s i g n e d t o ad d r e s s t h e p h y s i c a l , p s y c h o s o c i a l and s p i r i t u a l needs o f d y i n g p a t i e n t s and t h e i r f a m i l i e s ( H e a l t h and W e l f a r e Canada, 1982, p . l ) . Thus, p a l l i a t i v e c a r e i s a c t i v e , c o m p a s s i o n a t e c a r e o f t h e t e r m i n a l l y i l l . I t s aim i s t o improve t h e q u a l i t y o f l i f e o f t h e t e r m i n a l l y i l l so t h a t " t h e s e p e o p l e can t r u l y be s a i d t o l i v e u n t i l t h e y d i e " (Canadian M e d i c a l A s s o c i a t i o n (CMA), 1987, p . 3 4 ) . P a l l i a t i v e c a r e c o n s i d e r s b o t h t h e d y i n g p e r s o n and t h e f a m i l y (as d e f i n e d by t h e p a t i e n t ) t o be t h e u n i t o f c a r e and i n v o l v e s them i n t h e d e c i s i o n - m a k i n g r e l a t e d t o t h a t c a r e . The p a t i e n t and f a m i l y a r e a s s u r e d t h i s way t h a t t h e i r b e l i e f s w i l l be r e s p e c t e d and t h a t t h e conduct o f t h e p a t i e n t s c a r e w i l l be i n l i n e w i t h t h o s e b e l i e f s . P a l l i a t i v e c a r e " a t t e m p t s t o r e s t o r e t o t h e i n d i v i d u a l c o n t r o l o v e r h i s o r her l i f e a t a t i m e when a s e r i e s o f u n r e s o l v a b l e l o s s e s o c c u r and i n d i v i d u a l i t y i s t h r e a t e n e d " (CMA, 1987, p. 3 4 ) . P a l l i a t i v e c a r e needs t o be p r o v i d e d by a t r a i n e d team o f p r o f e s s i o n a l s and n o n - p r o f e s s i o n a l members (CMA, 1987) . The team s h o u l d a t l e a s t i n c l u d e p h y s i c i a n s , n u r s e s , s o c i a l w o r k e r s , s p i r i t u a l c o u n s e l l o r s , and v o l u n t e e r s . I t a l s o needs t o be a v a i l a b l e 24 hours a day, 7 days a week. F o r p a t i e n t s who a r e a b l e t o be a t home, c o n t i n u i t y s h o u l d e x i s t between t h e home s e t t i n g and i n p a t i e n t s e t t i n g . As w e l l , a c t i v e s u p p o r t needs t o be a v a i l a b l e t h r o u g h o u t t h e bereavement p r o c e s s . P a l l i a t i v e c a r e i s a c o n s c i e n t i o u s a p p r o a c h t o m e e t i n g t h e needs o f t h e d y i n g p a t i e n t and t h e f a m i l y , t h r o u g h c o m p a s s i o n a t e i n v o l v e m e n t . I t i s t h e f a c i l i t a t i o n o f r e s o u r c e s t o t h e c o n c e r n s and needs o f t h e i n d i v i d u a l , f a m i l y and f r i e n d s . I t i s t h e c a t a l y z i n g o f communication about t h e u n c e r t a i n t i e s and a n x i e t i e s o f l i f e and d e a t h t h a t so o f t e n g e t l o s t i n t h e f r e n z y t o save l i f e . I t i s t h e c o n n e c t e d n e s s t h a t h e l p s a p e r s o n l i v e a q u a l i t y e x i s t e n c e u n t i l d e a t h . I n a s o c i e t y t y p i f i e d by "mastery o v e r t h e e n v i r o n m e n t " , t h e o b j e c t i v e o f s t a n d a r d m e d i c a l t h e r a p e u t i c s i s m a stery over d i s e a s e and t h e r e b y , d e a t h ( C o r l e s s , 1983). When t h i s i s no l o n g e r f e a s i b l e , i t appears t h a t t h e r e i s " n o t h i n g more t o be done". Those c o n c e r n e d w i t h p a l l i a t i v e c a r e argue however, t h a t a l t h o u g h n o t h i n g f u r t h e r can be done about t h e d i s e a s e s o mething can be done f o r t h e p a t i e n t . Symptom c o n t r o l and a c o n c e r n w i t h t h e p h y s i c a l , p s y c h o l o g i c a l , s o c i a l , f i n a n c i a l , 16 l e g a l , and s p i r i t u a l a s p e c t s o f p a t i e n t and f a m i l y a r e a p p r o p r i a t e a r e a s o f a c t i o n . P a l l i a t i v e c a r e programs have many t h i n g s i n common. T h e i r o r i e n t a t i o n i s h u m a n i s t i c i n t h e i r c o n c e r n f o r t h e w e l l - b e i n g o f t h e p a t i e n t and h i s o r h e r f a m i l y . They a r e h o l i s t i c i n d i r e c t i n g a t t e n t i o n t o t h e whole p a t i e n t and d r a w i n g upon t h e whole armamentarium o f m e d i c a l c a r e t h r o u g h t h e use o f a m u l t i d i s c i p l i n a r y team. T h e i r f o c u s i s upon l i f e and l i v i n g r a t h e r t h a n upon d e a t h and d y i n g . They v i e w d e a t h as a n a t u r a l p a r t o f l i f e , b u t as one t h a t , l i k e b i r t h , can be made e a s i e r by t h e p r o v i s i o n o f some h e l p (Zimmerman, 1986, p . 1 2 ) . However, i t i s e r r o n e o u s and m i s l e a d i n g t o make t h e as s u m p t i o n t h a t t h e con c e p t o f p a l l i a t i v e / h o s p i c e c a r e i s b e i n g used " t o d e s c r i b e a s i n g l e u n i v e r s e o f i n s t i t u t i o n s and programs t h a t s h a r e a g r e a t s i m i l a r i t y i n t h e i r p u r p o s e , o r g a n i z a t i o n , and f u n c t i o n " (Zimmerman, 1986, p . 1 5 ) . A l t h o u g h p a l l i a t i v e c a r e programs s h a r e a common purpose, t h e y may d i f f e r w i d e l y from one a n o t h e r i n t h e way t h e y a c h i e v e t h a t p u r p o s e . There a r e numerous models f o r t h e d e l i v e r y o f p a l l i a t i v e c a r e i n e x i s t e n c e i n N o r t h A m e r i c a and Gr e a t B r i t a i n . They range from f r e e - s t a n d i n g h o s p i c e s , h o s p i t a l - b a s e d p a l l i a t i v e c a r e u n i t s , p a l l i a t i v e c a r e teams-, t o community-based c a r e programs ( H e a l t h and W e l f a r e Canada, 1982). Each program must t a k e an i n d i v i d u a l i z e d a pproach t o s e r v i n g i t s community b a s e d on t h e s i z e and n a t u r e o f t h e p o p u l a t i o n t o be s e r v e d , a v a i l a b l e r e s o u r c e s such as t r a i n e d c a r e g i v e r s and f u n d i n g , as w e l l as an i n t e r e s t t o s u p p o r t such a s e r v i c e . Each t y p e o f program b r i n g s w i t h i t advantages and d i s a d v a n t a g e s , b u t whatever model o f d e l i v e r y i s chosen, i t i s i m p o r t a n t t h a t t h e p h i l o s o p h y o f p a l l i a t i v e c a r e be f a i t h f u l l y a p p l i e d . A d v o c a t e s o f p a l l i a t i v e c a r e s t r e s s t h a t t h e r e i s a l i m i t t o what modern m e d i c i n e can do. Once t h a t p o i n t has been r e a c h e d , c u r a t i v e t r e a t m e n t s h o u l d cease, and a p a t i e n t s h o u l d be a b l e t o l i v e out t h e r e m a i n i n g t i m e as c o m f o r t a b l y as p o s s i b l e . The p h i l o s o p h y o f p a l l i a t i v e c a r e i s t h a t i t i s not a " p l a c e " , b u t r a t h e r i t i s a program and i t i s an a t t i t u d e . " I t i s a b a s i c d i f f e r e n c e i n a t t i t u d e s about t h e meaning and v a l u e o f human l i f e , and about t h e s i g n i f i c a n c e o f d e a t h i t s e l f , w h i c h we see a t work i n t h e p l a c e c a l l e d h o s p i c e " ( S t o d d a r d , 1978, p . 1 1 ) . I n summary, p a l l i a t i v e c a r e i s a n o n t r a d i t i o n a l r e s p o n s e t h a t encourages t h e d y i n g p e r s o n and h i s o r h e r f a m i l y t o t a k e back and own t h e e x p e r i e n c e o f d e a t h . How p r e s e n t t h e c o n c e p t o f p a l l i a t i v e c a r e i s i n our m e d i c a l i n s t i t u t i o n s has i m p o r t a n t i m p l i c a t i o n s f o r t h e p e r s o n . How we d i e i s a r e f l e c t i o n o f what we a r e as a community and what we v a l u e as a s o c i e t y . 18 3. THE PALLIATIVE/HOSPICE CARE MOVEMENT a) The S o c i a l Movement Many a u t h o r s have r e f e r r e d t o t h e r a p i d development o f p a l l i a t i v e / h o s p i c e c a r e programs as i n s t i t u t i n g a s o c i a l movement (Dubois, 1980; C o r l e s s , 1983; Saunders, 1980; S t o d d a r d , 1978; T o r r e n s , 1985). W h i l e t h e con c e p t o f h o s p i c e and p a l l i a t i v e c a r e i s not new, i t s c u r r e n t i n c a r n a t i o n d a t e s from t h e 1960's and has t h e appearance o f "an i d e a whose t i m e has come" (Dawson, 1990, u n p u b l i s h e d ) . I t has been argued t h a t h o s p i c e c a r e i s not a new development, but r a t h e r a r e t u r n t o o l d v a l u e s . C l e a r l y i t u t i l i z e s some t e c h n i q u e s t h a t d a t e back many y e a r s , however, as we have seen i n t h e p r e v i o u s s e c t i o n , i t does r e p r e s e n t some new a p p l i c a t i o n s o f o l d knowledge. C e r t a i n l y t h i s a pproach has immensely e n l a r g e d t h e scope o f our c a p a c i t y t o d e a l w i t h t h e t e r m i n a l l y i l l . The impetus f o r t h e h o s p i c e movement as an a l t e r n a t e form o f c a r e f o r t h e t e r m i n a l l y i l l has c l e a r l y a r i s e n as a r e s u l t o f two major i n f l u e n c e s . F i r s t was t h e u n v e i l i n g o f t h e taboo o f d e a t h and d y i n g p a r t i c u l a r l y by E l i s a b e t h K u b l e r - R o s s and by C e c i l y Saunders, who r e v i v e d t h e term ' h o s p i c e ' . C l e a r l y , b o t h o f t h e s e women have i n c r e a s e d p u b l i c awareness o f t h e needs o f t h e d y i n g and t h e i r f a m i l i e s and have c o n t r i b u t e d much t o our u n d e r s t a n d i n g o f t h e d y i n g p r o c e s s i t s e l f and methods f o r humane c a r e . Second, t h e apparent i n a b i l i t y o f l a r g e m e d i c a l 19 i n s t i t u t i o n s and t h e i r p r o f e s s i o n a l c a r e g i v e r s t o p r o v i d e t h e h u m a n i s t i c and i n d i v i d u a l i z e d c a r e r e q u i r e d by t h e t e r m i n a l l y i l l gave b i r t h t o t h e c o n c e r n f o r " d o i n g s o m e t h i n g " f o r d y i n g i n d i v i d u a l s and t h e i r f a m i l i e s . I n t e r e s t has been d e m o n s t r a t e d by b o t h consumers o f c a r e and p r o f e s s i o n a l s a l i k e , who have a t t e m p t e d t o b r e a k t h r o u g h t h e taboo o f d e a t h . W i t h t h e s p r e a d o f t h e h o s p i c e c o n c e p t i n our c u l t u r e , many o f us may d i s c o v e r t h a t we a r e l e a r n i n g from t h e s i c k how t o be w e l l a g a i n , and from t h e d y i n g how t o l i v e ( S t o d d a r d , 1978, p. 3 6 ) . C l o s e l y a s s o c i a t e d w i t h t h i s movement i s an i n c r e a s e i n c o n c e r n s about human r i g h t s , i n c l u d i n g t h e r i g h t t o d i e , t h e r i g h t t o d i a g n o s t i c d i s c l o s u r e , and t h e r i g h t t o p a r t i c i p a t e i n d e c i s i o n s ' s about one's own m e d i c a l c a r e ( S i l v e r s t o n e , 1984) . Zimmerman (1986) comments t h a t he f i n d s t h e p h r a s e " h o s p i c e movement" b o t h awkward and c o n f u s i n g . He argues t h a t because we have r e a c h e d t h e p o i n t where h o s p i c e programs a r e a common p a r t o f our h e a l t h c a r e r e a l i t y , we need not r e f e r t o i t as a new phenomenon sweeping t h e n a t i o n . H i s p o i n t may c o n t a i n more v a l i d i t y i n t h e f u t u r e as t h e r e remains much r e s i s t a n c e t o t h e concept o f p a l l i a t i v e c a r e . U n t i l t h i s r e s i s t a n c e i s almost c o m p l e t e l y e r a d i c a t e d , t h e d e s i g n a t i o n o f p a l l i a t i v e c a r e as a "movement" i s s t i l l r e q u i r e d t o keep t h e momentum g o i n g towards complete i n t e g r a t i o n i n t o t h e h e a l t h 20 c a r e d e l i v e r y system. Zimmerman (1986) f u r t h e r s t a t e s t h a t p erhaps t h e t e r m "movement" r e f l e c t s t h e r e l a t i v e l y g r e a t e r i n v o l v e m e n t o f i n d i v i d u a l s o u t s i d e t h e m e d i c a l f i e l d i n t h e development o f h o s p i c e programs. T h i s may be a c c u r a t e i n terms o f t h e development i n t h e U n i t e d S t a t e s , however, i n Canada t h e p a l l i a t i v e c a r e programs a r e f o r t h e most p a r t h o s p i t a l - b a s e d ( H e a l t h and W e l f a r e Canada, 1982) . I t may be s a i d t h a t p a l l i a t i v e / h o s p i c e c a r e programs have not p r o v i d e d a l l o f t h e answers t o t h e problems o f c a r i n g f o r t h e t e r m i n a l l y i l l , b u t i t may be p r o v i d i n g a new f o c u s . We have begun t o r e a l i z e , I b e l i e v e , t h a t t h e enemy a l l a l o n g was not d e a t h , b u t our own u n w i l l i n g n e s s t o i n c o r p o r a t e i t s r e a l i t y i n t o our c o n s c i o u s n e s s ( S t o d d a r d , 1978, p . 6 ) . b) P a l l i a t i v e Care i n Canada The f i r s t p a l l i a t i v e c a r e programs i n Canada began t o d e v e l o p i n t h e e a r l y 1970's. Dr. B a l f o u r Mount i s r e c o g n i z e d as b e i n g t h e f a t h e r o f p a l l i a t i v e c a r e i n Canada, a l t h o u g h he d i d not s p e a r h e a d t h e f i r s t program. A 1973 s t u d y a t t h e R o y a l V i c t o r i a H o s p i t a l i n M o n t r e a l r e v e a l e d t h a t t h e p h y s i c a l and s o c i a l needs o f d y i n g p a t i e n t s went u n r e c o g n i z e d and unmet. Mount found s i g n i f i c a n t problems such as i s o l a t i o n , l a c k o f communication - between t h e s t a f f , p a t i e n t s , and f a m i l i e s , and unmet m e d i c a l needs. Thus, i n 1975 a f t e r a lmost 21 two y e a r s o f d i s c u s s i o n and p l a n n i n g , a P a l l i a t i v e Care S e r v i c e was opened a t t h e R o y a l V i c t o r i a H o s p i t a l . I n t e r e s t i n g l y , t h e program was not i n a s e p a r a t e f r e e s t a n d i n g b u i l d i n g such as t h e a r c h e t y p e S t . C h r i s t o p h e r ' s H o s p i c e i n London; i t was i n t e g r a t e d i n t o t h e e x i s t i n g p a r e n t h o s p i t a l . A l t h o u g h a s i m i l a r u n i t had been e s t a b l i s h e d a s h o r t t i m e e a r l i e r a t S t . B o n i f a c e H o s p i t a l i n Winnipeg, t h e program a t R o y a l V i c t o r i a r a p i d l y became a promi n e n t program. Under t h e l e a d e r s h i p o f B a l f o u r Mount t h e program has become a model f o r p a l l i a t i v e c a r e u n i t s around t h e w o r l d , and remains Canada's l a r g e s t comprehensive program. W h i l e home c a r e i s t h e main f o c u s o f t h e s e r v i c e , t h e r e i s a l s o a p a l l i a t i v e c a r e ward i n t h e h o s p i t a l , and a c o u n s e l l i n g s e r v i c e t o a c u t e c a r e beds. S i n c e t h e o p e n i n g o f t h e f i r s t two u n i t s i n Canada a t S t . B o n i f a c e H o s p i t a l and R o y a l V i c t o r i a H o s p i t a l , a l o t o f i n t e r e s t i n p a l l i a t i v e / h o s p i c e c a r e has been g e n e r a t e d t h r o u g h o u t Canada. The development o f programs has been v i r t u a l l y a l l c e n t e r e d around h o s p i t a l s , as opposed t o t h e development i n t h e U n i t e d S t a t e s where t h e i n i t i a t i v e came from groups o u t s i d e o f t h e m e d i c a l system. I n Canada, i t has not been e c o n o m i c a l l y f e a s i b l e t o s e t up new i n s t i t u t i o n s d e v o t e d e n t i r e l y t o p a l l i a t i v e c a r e . The o r g a n i z a t i o n a l c o n s t r a i n t s o f i n t e g r a t i n g i n t o t h e c u r r e n t h e a l t h c a r e system has s l o w e d t h e development o f programs but has not h a l t e d i t . A s u r v e y c o n d u c t e d f o r t h e P a l l i a t i v e Care F o u n d a t i o n i n 22 Canada i n 1982 r e v e a l e d t h a t t h e r e were 64 h o s p i c e programs a l r e a d y o p e r a t i n g and a f u r t h e r 18 t o be implemented w i t h i n 12 months o f t h e s u r v e y . An a d d i t i o n a l 25 h o s p i t a l s s t a t e d , " t h a t even though t h e y d i d not have f o r m a l programs o f p a l l i a t i v e c a r e , t h e y f e l t t h a t t h e y f o l l o w e d t h e g e n e r a l p h i l o s o p h y o f p a l l i a t i v e c a r e i n t h e i r p r e s e n t program and t h a t t h e y i n c l u d e d t h e u s u a l h o s p i c e component s e r v i c e s i n t h e i r r e g u l a r a r r a y o f s e r v i c e s " ( T o r r e n s , 1985, p . 5 2 ) . T h i s s t u d y a l s o f o u n d t h a t s e r v i c e s o r programs v a r i e d c o n s i d e r a b l y i n s i z e r a n g i n g from t h o s e i n l a r g e t e a c h i n g h o s p i t a l s w i t h a complete ward o f d e s i g n a t e d beds f o r h o s p i c e p a t i e n t s t o t h o s e s e r v i c e d by a s i n g l e p e r s o n . I n g e n e r a l , t h e m a j o r i t y o f t h e f o r m a l l y o r g a n i z e d e x i s t i n g programs were l o c a t e d i n l a r g e t e a c h i n g h o s p i t a l s o r g e n e r a l h o s p i t a l s . The m a j o r i t y o f t h e i n f o r m a l p a l l i a t i v e c a r e s e r v i c e s ( i e . programs t h a t o f f e r e d c a r e t h a t f o l l o w e d t h e u s u a l models w i t h o u t a f o r m a l i z e d p o l i c y ) were l o c a t e d i n s m a l l h o s p i t a l s , e s p e c i a l l y i n t h e w e s t e r n p r o v i n c e s . T h i r t y -f i v e p e r c e n t o f t h e programs had i n p a t i e n t beds s p e c i f i c a l l y d e s i g n a t e d f o r h o s p i c e p a t i e n t s , and s i x t y - f i v e p e r c e n t used whatever beds were a v a i l a b l e s c a t t e r e d t h r o u g h o u t t h e h o s p i t a l . A t h i r d o f t h e programs p r o v i d e d home c a r e as w e l l as i n p a t i e n t s e r v i c e s . Symptom c o n t r o l s e r v i c e s and c o u n s e l l i n g f o r p a t i e n t s and f a m i l i e s b e f o r e d e a t h were i n c l u d e d i n v i r t u a l l y a l l t h e 23 p a l l i a t i v e c a r e programs i n Canada. Only 75% o f t h e s e r v i c e s , however, i n c l u d e d bereavement c o u n s e l l i n g f o r t h e f a m i l y a f t e r t h e d e a t h had o c c u r r e d . L a r g e p e r c e n t a g e s o f t h e programs i n c l u d e d r e l i g i o u s c o u n s e l l i n g and s t a f f e d u c a t i o n . A d d i t i o n a l s e r v i c e s such as music t h e r a p y , d i e t a r y c o u n s e l l i n g and c l i n i c a l pharmacy s e r v i c e s were a l s o d e s c r i b e d by a few r e s p o n d e n t s . I n summary, p a l l i a t i v e c a r e programs i n Canada a r e h o s p i t a l - b a s e d o r h o s p i t a l - s p o n s o r e d , and t h e r e a r e v i r t u a l l y no f r e e s t a n d i n g h o s p i c e s and r e l a t i v e l y few community-based programs. The h o s p i t a l - s p o n s o r e d p a l l i a t i v e c a r e programs i n Canada may be r a t h e r s i z e a b l e o p e r a t i o n s d e p ending on t h e l o c a t i o n , b u t t h e y a l s o may be q u i t e s m a l l w i t h no a c t u a l i n p a t i e n t beds o f t h e i r own and v i r t u a l l y no permanent o r p a r t - t i m e s t a f f . D e t a i l s o f p a l l i a t i v e / h o s p i c e c a r e i n Canada can o n l y be d i s c u s s e d i n g e n e r a l terms u n t i l t h e r e i s a u n i f o r m d a t a - c o l l e c t i n g system and s t a n d a r d i z a t i o n o f terms and p r o c e d u r e s . I n B r i t i s h Columbia t h e f i r s t p a l l i a t i v e c a r e program began i n 1980. I n 1983 a t a p r o v i n c i a l forum, t h e need f o r g u i d e l i n e s i n development was d i s c u s s e d , and t h i s r e s u l t e d i n t h e B.C. H o s p i c e / P a l l i a t i v e Care A s s o c i a t i o n (HPCA) b e i n g formed a y e a r l a t e r (Downing, 1988). T h i s o r g a n i z a t i o n has d i v i d e d t h e p r o v i n c e i n t o e i g h t r e g i o n s , w h i c h h o l d t h e i r own e d u c a t i o n a l and a d m i n i s t r a t i v e meetings t h r o u g h o u t t h e y e a r 24 and an a n n u a l g e n e r a l m e e t i n g . As w e l l , t h e BC M e d i c a l A s s o c i a t i o n have a P a l l i a t i v e Care Committee. A c c o r d i n g t o Downing (1988), t h e p a l l i a t i v e / h o s p i c e programs i n B.C. a r e d i v i d e d by t h e HPCA i n t o f o u r l e v e l s b a s e d on how many o f n i n e "components o f c a r e " a program o f f e r s . The n i n e components o f c a r e a r e a d m i n i s t r a t i v e , symptom c o n t r o l , home c a r e , h o s p i t a l s e r v i c e s , bereavement s e r v i c e s , p a s t o r a l c a r e , v o l u n t e e r i n v o l v e m e n t , p r o f e s s i o n a l t r a i n i n g and e d u c a t i o n , r e s e a r c h and e v a l u a t i o n . Thus, a L e v e l 1 program has o n l y one component whereas a L e v e l 4 Program o f f e r s s i x t o n i n e components. As o f June 1987 t h e r e were e i g h t e e n L e v e l 1, t w e n t y - s i x L e v e l 2, t h r e e L e v e l 3 and t h r e e L e v e l 4 programs (Downing, 1988) . I t i s o b v i o u s from t h e s e s t a t i s t i c s t h a t t h e m a j o r i t y o f t h e programs a r e s m a l l and have l i m i t e d s e r v i c e s t o o f f e r . The BC HPCA's c a t e g o r i e s a r e b e i n g u s e d by o t h e r p r o v i n c i a l a s s o c i a t i o n s as a b a s i s f o r r e v i s i n g t h e i r own g u i d e l i n e s . c) P a l l i a t i v e Care and t h e H e a l t h Care System I t i s c l e a r from t h e p r e v i o u s d i s c u s s i o n t h a t i n Canada p a l l i a t i v e c a r e i s a s s o c i a t e d w i t h t h e c u r r e n t h e a l t h c a r e system and p r o b a b l y w i l l c o n t i n u e t o be. However, what i s not c l e a r i s how i n t e g r a l a p a r t o f t h e h e a l t h c a r e d e l i v e r y system i t i s . The r a p i d growth o f p a l l i a t i v e c a r e programs has not been accompanied by e v a l u a t i o n . T h e r e f o r e , a l t h o u g h 25 t h e r e i s an i n c r e a s i n g w e a l t h o f i n f o r m a t i o n about t h e a c t u a l numbers o f p a l l i a t i v e / h o s p i c e programs t h a t a r e i n e x i s t e n c e , t h e r e i s a c t u a l l y v e r y l i t t l e d e t a i l e d i n f o r m a t i o n about t h e i n t e n s i t y o f s e r v i c e s t h e y p r o v i d e o r even on t h e impact on t h e p a t i e n t s . There i s v i r t u a l l y no i n f o r m a t i o n about t h e numbers and k i n d s o f p a t i e n t s not b e i n g s e r v e d . W i t h t h e r a p i d growth o f p a l l i a t i v e / h o s p i c e programs i n Canada, t h e r e must n e c e s s a r i l y a r i s e q u e s t i o n s o f r e s p o n s i b i l i t y and a c c o u n t a b i l i t y . T o r r e n s (1985) argues t h a t t h e suddenness o f development and u n p l a n n e d growth has had b o t h n e g a t i v e and p o s i t i v e e f f e c t s . A p o s i t i v e i m p l i c a t i o n o f t h e l a c k o f f o r m a l i z e d p l a n n i n g i s t h a t i t a l l o w e d t h e d e v e l o p e r s t o be u n r e s t r a i n e d i n t h e i r e n t h u s i a s m and t h e i r t h i n k i n g by any p r e v i o u s models. I f i t had been n e c e s s a r y t o go t h r o u g h f o r m a l p l a n n i n g p r o c e d u r e s as o t h e r h e a l t h programs, t h e r e would p r o b a b l y be fewer programs i n e x i s t e n c e and l e s s o f a v a r i e t y . C e r t a i n l y t h e h o s p i c e movement would not be as s t r o n g and as v i t a l as i t i s . On t h e n e g a t i v e s i d e , w i t h o u t t h e f o r m a l p l a n n i n g , a number o f programs were d e v e l o p e d w i t h o u t adequate r e s o u r c e s o r c l e a r d e f i n i t i o n o f purpose and o b j e c t i v e s , e s p e c i a l l y i n t h e U n i t e d S t a t e s . P r o b a b l y , a number o f programs began w i t h o u t a c l e a r u n d e r s t a n d i n g o f what was needed o r p o s s i b l e i n t h a t community. A t t e m p t s have not been made t o d e t e r m i n e 26 how the program would cooperate with and be integrated into the p r e - e x i s t i n g health care system. Understandably, t h i s has had the consequence of a l i e n a t i n g and causing resentment i n ce r t a i n parts of the system. In the future, e s p e c i a l l y as the competition f o r scarce health care d o l l a r s grows, new programs w i l l have to be appropriately planned and obj e c t i v e l y evaluated. This w i l l benefit the health system, the p a l l i a t i v e / h o s p i c e programs, the hospice movement i t s e l f , and the patients they are intended to serve. As i t i s , there i s l i t t l e back-up funding to e s t a b l i s h or enhance e x i s t i n g programs. By and large, i t i s the Level 3 and 4 programs that have funding support from health care i n s t i t u t i o n s or government. P a l l i a t i v e care w i l l necessarily have to become an i n t e g r a l part of our health care system. Ours i s a society with a ra p i d l y aging population, and diseases l i k e AIDS and cancer are on the r i s e . More and more, Canadians and t h e i r f a m i l i e s are facing terminal i l l n e s s . Indeed, many issues facing health care involve p a l l i a t i o n care, such as l i v i n g w i l l s , euthanasia, death with dignity; home versus h o s p i t a l care, use of acute beds for the dying, lack of funding, adequate fees for medical care of the dying at home; t r a i n i n g , research and qual i t y assurance i n p a l l i a t i v e care. These issues face the providers, funders, and receivers of hospice care. 27 U n t i l now, p a l l i a t i v e c a r e has l a r g e l y been a m i d d l e -c l a s s phenomenon. Most p a t i e n t s a r e f e m a l e , w h i t e , and have a f a m i l y i n a t t e n d a n c e ( T o r r e n s , 1985). The problem, u n f o r t u n a t e l y , i s t h a t t h e r e a r e many d y i n g p a t i e n t s who do not f i t t h i s d e s c r i p t i o n . F o r example, p a t i e n t s w i t h a l c o h o l i s m o r m e n t a l i l l n e s s , o r l a c k o f a permanent home o r f a m i l y , need h o s p i c e programs as much as t h e p r e f e r r e d p a t i e n t now b e i n g s e r v e d , perhaps even more. " H o s p i c e s must c a r e f o r p a t i e n t s a c r o s s t h e s o c i a l and r a c i a l s p e ctrum i f t h e y a r e t o f u l f i l l t h e i r h i g h e s t i d e a l s and p u r p o s e s " ( T o r r e n s , 1985, p.70) . The m a j o r i t y o f p a t i e n t s i n h o s p i c e / p a l l i a t i v e c a r e a r e t e r m i n a l l y i l l from n e o p l a s t i c d i s e a s e . A l t h o u g h t h e r e has been a moderate amount o f e x p e r i e n c e , not a g r e a t d e a l has been w r i t t e n about t e r m i n a l c a r e f o r p a t i e n t s w i t h n o n m a l i g n a n t d i s e a s e . I n a c t u a l i t y most p u b l i s h e d m a t e r i a l d e s c r i b i n g h o s p i c e c a r e f o r noncancer p a t i e n t s has d e a l t w i t h a s i n g l e d i s e a s e e n t i t y o r has c o n s i d e r e d t h e t o p i c o n l y b r i e f l y and p e r i p h e r a l l y . There has been a n a t u r a l t e n d e n c y i n much o f t h e l i t e r a t u r e on h o s p i c e t o s l i d e back and f o r t h i n d i s c u s s i o n o f t e r m i n a l i l l n e s s and c a n c e r as though t h e two were t h e same. O b v i o u s l y , t h e r e a r e many d i s o r d e r s a s i d e from c a n c e r t h a t a r e p r o g r e s s i v e and f o r which t r e a t m e n t o f f e r s , a t some p o i n t , no r e a s o n a b l e p r o s p e c t o f r e v e r s i n g o r m a t e r i a l l y 28 s l o w i n g t h e d i s e a s e . The p o i n t a t w h i c h t h i s o c c u r s v a r i e s from one d i s e a s e t o a n o t h e r . Some, such as c e r t a i n n e u r o l o g i c a l d i s o r d e r s a r e i n c u r a b l e from t h e t i m e t h e d i a g n o s i s i s f i r s t made. D i s e a s e s a l s o v a r y i n t h e speed o f t h e i r p r o g r e s s i o n once t h e y a r e i n c u r a b l e . The o b j e c t i v e s and p r i n c i p l e s o f c a r e f o r t h e s e p a t i e n t s i s s t i l l t o p r o v i d e an o p t i m a l b a l a n c e o f q u a n t i t y and q u a l i t y o f l i f e f o r each p a t i e n t . I n o r d e r f o r p a l l i a t i v e c a r e t o occupy a l a r g e r r o l e i n our h e a l t h c a r e system, i t needs t o be e x t e n d e d beyond our h o s p i t a l s . Long-term c a r e f a c i l i t i e s , m e n t a l i n s t i t u t i o n s and community m e n t a l h e a l t h c e n t r e s a l l need t o l o o k a t i m p l e m e n t i n g programs and p o l i c y . H i s t o r i c a l l y , p a l l i a t i v e c a r e e f f o r t s have been a f f o r d e d t o p a t i e n t s p e r c e i v e d t o have a " d i f f i c u l t d e a t h " . G r a d u a l l y , t h e emphasis has moved more b r o a d l y t o a l l d y i n g p a t i e n t s , r e g a r d l e s s o f whether t h e i r d e a t h seemed t o be d i f f i c u l t o r n o t . To c o n t i n u e t h i s a pproach, p a l l i a t i v e c a r e programs must make t h e i r way i n t o a l l a r e nas and i n s t i t u t i o n s where d e a t h may o c c u r . I f t h i s i s not a c c o m p l i s h e d , h i s t o r y w i l l judge t h e h o s p i c e movement a s o c i a l movement t h a t o c c u r r e d i n i n d u s t r i a l i z e d n a t i o n s i n t h e l a t t e r p a r t o f t h e 2 0 t h c e n t u r y and t h a t was committed t o i m p r o v i n g t h e l i v e s and d e a t h o f a l a r g e l y m i d d l e - c l a s s c l i e n t e l e " ( C o r l e s s , 1983, p.350). 29 The h o s p i c e movement cannot be dependent on o n l y a few e n t h u s i a s t i c l a y p e r s o n s and h e a l t h p r o f e s s i o n a l s i f i t wants t o be more c l o s e l y i n t e g r a t e d i n t o t h e e x i s t i n g h e a l t h c a r e system. Government s u p p o r t as w e l l as s o c i e t a l s u p p o r t i s a l s o needed. F o r t u n a t e l y t h e r e has been c o n s i d e r a b l e d i r e c t and i n d i r e c t government s u p p o r t i n Canada. I n 1982 t h e P o l i c y , P l a n n i n g and I n f o r m a t i o n B r a n c h o f t h e Department o f N a t i o n a l H e a l t h and W e l f a r e e v a l u a t e d c o s t s o f p a l l i a t i v e c a r e . I n p a r t i c u l a r , t h e r e s e a r c h e r s l o o k e d a t two Canadian s t u d i e s and two American s t u d i e s and c o n c l u d e d t h a t t h e r e was a b a s i s f o r b e l i e v i n g t h a t p a l l i a t i v e c a r e s e r v i c e s c o u l d reduce a g g r e g a t e h e a l t h c a r e e x p e n d i t u r e s i n Canada. Indeed, a c c o r d i n g t o rough e s t i m a t e s b a s e d on t h e s c a n t e v i d e n c e a v a i l a b l e , t h e i n c r e a s e s i n h o s p i t a l c o s t s c o u l d be r e d u c e d by as much as $700 m i l l i o n p e r y e a r i f an i n t e g r a t e d , n a t i o n a l p a l l i a t i v e c a r e program were i n t r o d u c e d ( H e a l t h and W e l f a r e Canada, 1982, p . 9 ) . O b v i o u s l y , government s u p p o r t o f such a program i s c l o s e l y l i n k e d t o economics. The n a t u r e and degree o f t h a t s u p p o r t w i l l f l u c t u a t e depending on t h e outcome o f c a r e f u l l y d e t a i l e d economic assessments o f t h i s a l t e r n a t e form o f c a r e . L i k e w i s e , s o c i e t a l a c c e p t a n c e o f such a program i s dependent on t h e t y p e and degree o f government i n v o l v e m e n t i n t h e f i n a n c i n g o f such a program. I n 1981, t h e Department o f 30 N a t i o n a l H e a l t h and W e l f a r e p u b l i s h e d g u i d e l i n e s f o r t h e e s t a b l i s h m e n t o f p a l l i a t i v e c a r e s e r v i c e s i n h o s p i t a l s , t h e r e b y i m p l y i n g t h a t i t was e n c o u r a g i n g t h e development o f such s e r v i c e s . I n summary, p a l l i a t i v e c a r e as an a l t e r n a t e t y p e o f c a r e o c c u p i e s an i m p o r t a n t p l a c e i n our h e a l t h c a r e system, however, t h a t r o l e needs t o be expanded. T h i s e x p a n s i o n w i t h i n t h e system s h o u l d be based not on i n s t i n c t , e n t h u s i a s m , and humane v a l u e s a l o n e , but on c a r e f u l needs assessment, r e s o u r c e a l l o c a t i o n s t u d i e s , and c o s t - e f f e c t i v e n e s s s t u d i e s . I n t h e n e x t s e c t i o n , t h e p a r t i c u l a r s i t u a t i o n f a c e d by R i v e r v i e w H o s p i t a l as i t f o c u s e s on t h e p a l l i a t i v e c a r e q u e s t i o n w i l l be d i s c u s s e d . 4. PROBLEM DEFINITION: PALLIATIVE CARE AND RIVERVIEW HOSPITAL R i v e r v i e w H o s p i t a l i s t h e p r o v i n c i a l m e n t a l i n s t i t u t i o n f o r B r i t i s h C o lumbia. " I t has been t h e t r e a t m e n t , r e h a b i l i t a t i o n and asylum c e n t r e f o r a d u l t and e l d e r l y p e o p l e w i t h t h e most s e r i o u s and d i s a b l i n g m e n t a l i l l n e s s e s " ( P r o v i n c e o f B.C., 1987, p . l ) . I n t h e 1980's government, h e a l t h p r o f e s s i o n a l b o d i e s and l a y groups c a l l e d f o r g u i d e l i n e s - and p o l i c i e s on r e s u s c i t a t i o n e f f o r t s and p a l l i a t i v e c a r e i n l o n g - t e r m c a r e i n s t i t u t i o n s , such as R i v e r v i e w H o s p i t a l . There i s c u r r e n t l y no f o r m a l p a l l i a t i v e c a r e program i n p l a c e a t R i v e r v i e w H o s p i t a l , a l t h o u g h B h o p a l w r i t e s t h a t t h e i n s t i t u t i o n has been " p r o v i d i n g p a l l i a t i v e c a r e f o r many y e a r s t o p a r t i c u l a r p a t i e n t s " (1989, p . l ) . T h i s i n d i c a t e s t h a t perhaps an unacknowledged i n f o r m a l p a l l i a t i v e c a r e program does e x i s t . The 1989 A c c r e d i t a t i o n Survey Re p o r t recommends t h e c r e a t i o n o f f o r m a l w r i t t e n g u i d e l i n e s and p o l i c y : I t i s n o t e d t h a t t h e r e i s no p o l i c y f o r "Do Not R e s u s c i t a t e " o r d e r s nor g u i d e l i n e s f o r p r o v i d i n g p a l l i a t i v e c a r e t o t h e t e r m i n a l l y i l l p a t i e n t . I t i s recommended t h a t a c l e a r p o l i c y and g u i d e l i n e s on t h e s e i s s u e s be d e v e l o p e d t o g u i d e t h e m e d i c a l and n u r s i n g s t a f f i n t h e i r work (p.17). The l a c k o f f o r m a l p o l i c y i s perhaps due t o a l a c k o f c l e a r u n d e r s t a n d i n g o f what s p e c i f i c needs a m e n t a l l y i l l p e r s o n has when d y i n g . D e s p i t e t h e p r e v a l e n c e o f c h r o n i c m e n t a l i l l n e s s , t h e r e i s a s o b e r i n g l a c k o f i n f o r m a t i o n about how t h e s e p e o p l e e x p e r i e n c e t h e d y i n g p r o c e s s . L e s s i s known about whether o r not t h e i r needs a r e b e i n g met. There i s l i t t l e known, t h e r e f o r e , about t h e p a l l i a t i v e c a r e needs o f t h e m e n t a l l y i l l and t h e most a p p r o p r i a t e means t o meet them. The most a p p r o p r i a t e model o f p a l l i a t i v e c a r e s e r v i c e d e l i v e r y w i l l need t o be d e c i d e d upon, t a k i n g i n t o account t h e h o s p i t a l ' s mandate, environment, and i n t e r n a l r e s i s t a n c e s . 32 Of c o n c e r n t o R i v e r v i e w H o s p i t a l i s how t o a p p l y p a l l i a t i v e c a r e p r i n c i p l e s t o p a t i e n t s who a r e s u f f e r i n g from p e r i p h e r a l and c e n t r a l nervous system d i s o r d e r s . These p e o p l e may w e l l b e n e f i t from h o s p i c e c a r e , but e x p e r i e n c e w i t h t h i s a p p l i c a t i o n has been l i m i t e d . Dementia o f v a r i o u s t y p e s , p a r t i c u l a r l y o f t h e A l z h e i m e r s ' v a r i e t y , comes i m m e d i a t e l y t o mind, p a r t i c u l a r l y i n view o f t h e immense s t r a i n t h a t t h i s c o n d i t i o n p l a c e s on f a m i l y members. P e r s i s t e n t v e g e t a t i v e s t a t e p o s s i b l y p r e s e n t s a n o t h e r i n t e r e s t i n g a p p l i c a t i o n f o r h o s p i c e p r i n c i p l e s a t R i v e r v i e w H o s p i t a l . Here, o f c o u r s e , t h e b e n e f i t s would be d e r i v e d a l m o s t e x c l u s i v e l y by t h e f a m i l y . Over t h e l a s t two y e a r s s p e c i a l committees have been s t r i v i n g t o c r e a t e w r i t t e n g u i d e l i n e s a t R i v e r v i e w H o s p i t a l . Two s e p a r a t e and c o n s e c u t i v e s p e c i a l committees o f t h e M e d i c a l A d v i s o r y Committee have been i n v o l v e d i n t h i s p r o j e c t . The f i r s t committee on P a l l i a t i v e Care was l a r g e and m u l t i d i s c i p l i n a r y i n c o m p o s i t i o n . I t i n v e s t i g a t e d p a l l i a t i v e c a r e i s s u e s r e l e v a n t t o R i v e r v i e w H o s p i t a l , and p r o d u c e d two documents - a d r a f t p o l i c y and g u i d e l i n e s ( B h o p a l , 1989). The second committee on P a l l i a t i v e Care i s a s m a l l one. I t has been a p p o i n t e d t o f u r t h e r i n v e s t i g a t e and a c t on f i n a l i z i n g a p o l i c y and g u i d e l i n e s . R i v e r v i e w H o s p i t a l i s t h e f i r s t m e n t a l i n s t i t u t i o n i n N o r t h A m e r i c a t o be c o n c e r n e d w i t h c r e a t i n g a p a l l i a t i v e c a r e p o l i c y . The i m p o r t a n c e o f t h i s i s b r o u g h t 33 s h a r p l y i n t o f o c u s when we c o n s i d e r t h a t as t h e p o p u l a t i o n i n our c o u n t r y ages, t h e p o p u l a t i o n o f l o n g - t e r m p s y c h i a t r i c a l l y i l l p a t i e n t s i s a l s o a g i n g and a good number o f t h e s e p a t i e n t s w i l l l i k e l y d i e i n i n s t i t u t i o n s . R i v e r v i e w H o s p i t a l can be commended f o r i t s a t t e n t i o n t o t h e i s s u e o f p a l l i a t i v e c a r e and i t s e f f o r t s t o i n t e g r a t e i t i n t o t h e i n s t i t u t i o n a l d e l i v e r y o f s e r v i c e s . However, i t seems somewhat premature t o i n t r o d u c e a p o l i c y w i t h o u t i n v e s t i g a t i n g t h e n a t u r e o f t h e environment and community i n t o w h i c h i t i s b e i n g i n t r o d u c e d . Thus, i n k e e p i n g w i t h T o r r e n s ' (1985) recommendation f o r o b j e c t i v e assessment and p l a n n i n g p r o c e d u r e s , t h i s s t u d y was c o n d u c t e d t o a s s e s s t h e need f o r a f o r m a l i z e d p a l l i a t i v e c a r e program. T h i s s t u d y i s an i n v e s t i g a t i o n i n t o t h e p e r c e p t i o n o f p r a c t i c e by h e a l t h c a r e p r o v i d e r s as i t p e r t a i n s t o t h e i r work w i t h d y i n g p s y c h i a t r i c a l l y i l l e l d e r l y p a t i e n t s i n t h e G e r i a t r i c D i v i s i o n o f R i v e r v i e w H o s p i t a l . To what e x t e n t i s p a l l i a t i v e c a r e b e l i e v e d t o be a l r e a d y p r a c t i s e d , and what a r e a s o f p r a c t i c e can be changed and improved upon? To what e x t e n t i s t h e r e a need f o r a f o r m a l i z e d p a l l i a t i v e c a r e program? As w e l l , i t i s my i n t e n t i o n t o use t h e f i n d i n g s t o a s s e s s what f a c t o r s c o u l d h i n d e r o r f a c i l i t a t e t h e s u c c e s s f u l i n t r o d u c t i o n o f p a l l i a t i v e c a r e g u i d e l i n e s and p o l i c y . I n t h e n e x t s e c t i o n , f a c t o r s r e l a t e d t o t h e r a p e u t i c c a r e o f t h e d y i n g w i l l be o u t l i n e d . These f a c t o r s a r e i m p o r t a n t t o u n d e r s t a n d as t h e y may s e r v e as 34 t h e f o u n d a t i o n f o r r e s i s t a n c e o r e n t h u s i a s m on t h e p a r t o f t h e o r g a n i z a t i o n i n i m p l e m e n t i n g a program. 5. KEY FACTORS RELATED TO THERAPEUTIC CARE OF THE DYING Because o f t h e n o n - t r a d i t i o n a l n a t u r e o f p a l l i a t i v e c a r e , a u n i q u e s i t u a t i o n a r i s e s when you t r y t o implement t h e conc e p t i n a f i e l d s e t t i n g such as R i v e r v i e w H o s p i t a l . I n t h e l i t e r a t u r e , we can f i n d s e v e r a l b e g i n n i n g e x p l a n a t i o n s f o r t h e d i f f i c u l t i e s t h a t may a r i s e d u r i n g i m p l e m e n t a t i o n o v e r and above t h o s e f a c t o r s d i s c u s s e d i n S e c t i o n One. A number o f key v a r i a b l e s r e l a t e d t o a p p r o p r i a t e c a r e o f t h e d y i n g i n d i v i d u a l and t h e i r f a m i l i e s have been i d e n t i f i e d . To t h e degree t h a t t h e s e f a c t o r s e x i s t o r do not e x i s t , t h e y w i l l have an impact on t h e t h e r a p e u t i c c a r e o f t h e d y i n g i n d i v i d u a l and t h e i r f a m i l i e s . T h i s s t u d y e x p l o r e s t h e c u r r e n t s i t u a t i o n a t R i v e r v i e w H o s p i t a l c o n c e r n i n g p a l l i a t i v e c a r e p r a c t i c e i n r e f e r e n c e t o t h e s e f a c t o r s . T h e r e f o r e , t h e c o n c e p t u a l framework o f t h i s t h e s i s i s c o n s t r u c t e d from s i x v a r i a b l e s t h a t have been e x t r a c t e d from t h e l i t e r a t u r e on p a l l i a t i v e c a r e and d y i n g i n i n s t i t u t i o n s . These f a c t o r s a r e : i ) d e a t h a n x i e t y i i ) o r g a n i z a t i o n a l c o n t e x t o f t h e h o s p i t a l i i i ) e x p e c t a t i o n s 'of p r o f e s s i o n a l r o l e i v ) e d u c a t i o n and t r a i n i n g i n c a r i n g f o r d y i n g p e r s o n s 35 and t h e i r f a m i l i e s v) teamwork v i ) communication and exchange o f d i a g n o s t i c i n f o r m a t i o n These r e a l i s t i c i s s u e s a r e not m u t u a l l y e x c l u s i v e b u t a r e v e r y much i n t e r t w i n e d and w i l l i n f l u e n c e each o t h e r . They w i l l be f u r t h e r e x p l a i n e d and d i s c u s s e d i n C h a p t e r Two. 6. ETHICAL ISSUES ARISING IN PALLIATIVE CARE P a l l i a t i v e / h o s p i c e programs a r e b e g i n n i n g t o s e r v e a l a r g e r and l a r g e r p r o p o r t i o n o f t h o s e p e o p l e who d i e i n our c o u n t r y . As t h i s s p e c i a l i z e d s e r v i c e becomes more g e n e r a l l y a v a i l a b l e i n our h e a l t h c a r e system, t h e v a r i o u s i n s t i t u t i o n s and a g e n c i e s w i l l have t o make v e r y i m p o r t a n t d e c i s i o n s r e g a r d i n g p o l i c y and d e l i v e r y o f s e r v i c e s . I n u n d e r t a k i n g t h e p o l i c y - m a k i n g p r o c e s s , i t becomes c l e a r t h a t t h e r e a r e a number o f v a l u e dilemmas t h a t a r i s e . These e t h i c a l i s s u e s c o n f r o n t c a r e g i v e r s and p o l i c y - m a k e r s a l i k e , and cannot be a v o i d e d when d e a l i n g w i t h t h e s e n s i t i v e i s s u e o f d e a t h and d y i n g . These i s s u e s a r e d i f f i c u l t t o r e s o l v e and t h e impasses r e a c h e d i n t r y i n g t o do so can o f t e n l e a d t o r e s i s t a n c e s on t h e p a r t o f t h e h e a l t h c a r e p e r s o n n e l , as o f t e n t h e a p p a r e n t s o l u t i o n s c o n f l i c t w i t h t h e i r p r o f e s s i o n a l c r e d o . Lynn and O s t e r w e i s (1985) e x p l a i n t h a t our h e a l t h c a r e i s 36 e s s e n t i a l l y g u i d e d by t h r e e m o r a l p r i n c i p l e s : a) p a t i e n t s s h o u l d be p r i m a r y d e c i s i o n makers; b) i n f o r m e d c o n s e n t i s an e s s e n t i a l element o f e t h i c a l l y c o r r e c t d e c i s i o n s , and c) s o c i e t y i s o b l i g e d t o d i s t r i b u t e h e a l t h c a r e i n an e q u i t a b l e f a s h i o n ( i n T o r r e n s , 1985, p.200). Depending on t h e s e t t i n g and t h e a p p l i c a t i o n o f t h e s e v a l u e s , t h e p o t e n t i a l f o r v a l u e c o n f l i c t s a r i s e . R i v e r v i e w H o s p i t a l , f o r example, w i l l have d i f f i c u l t y i n f o r m u l a t i n g p o l i c y t h a t does n ot c r e a t e c o n f l i c t , because o f t e n t i m e s t h e f i r s t two mo r a l p r i n c i p l e s cannot be f o l l o w e d . Knowing how t o r e s o l v e t h e e t h i c a l dilemmas t h a t a r i s e has i m p o r t a n t i m p l i c a t i o n f o r p r o v i d i n g o p t i m a l p a t i e n t c a r e . The f i r s t e t h i c a l i s s u e i s how t o d e f i n e t e r m i n a l i l l n e s s o r , i n o t h e r words, t h e passage from l i v i n g t o " d y i n g " . There i s an a r b i t r a r y l i n e t h a t moves a p e r s o n from one phase t o t h e o t h e r . That t r a n s i t i o n has i m p o r t a n t i m p l i c a t i o n s on t h e p a t i e n t ' s p s y c h o l o g i c a l , s o c i a l , and e m o t i o n a l o u t l o o k , as w e l l as on t h e t y p e o f t r e a t m e n t t h e y w i l l r e c e i v e . When and by what c r i t e r i a do we d e c i d e t o move from c u r a t i v e t o ' c a r e ' t r e a t m e n t o n l y ? Some p a l l i a t i v e c a r e programs w i l l not a c c e p t p a t i e n t s u n l e s s a l l o f t h e a v a i l a b l e a c t i v e t r e a t m e n t o p t i o n s have been t r i e d . T h e r e f o r e , t h i s begs t h e q u e s t i o n , how many o p t i o n s w i t h what l i k e l i h o o d o f s u c c e s s must a p a t i e n t have t r i e d and found t o be u n s u c c e s s f u l b e f o r e he or she i s 37 p e r m i t t e d t o choose h o s p i c e c a r e ? We need c l e a r l y w r i t t e n p o l i c i e s r e g a r d i n g h i g h - r i s k p r o c e d u r e s and u n e x p e c t e d outcomes t o c a r e t h a t b o t h may cause i a t r o g e n i c s u f f e r i n g o r even d e a t h . A n o t h e r i s s u e r e g a r d i n g t r e a t m e n t o p t i o n s i s : when does t r e a t m e n t aimed a t symptom c o n t r o l b o r d e r on murder? F o r example, a s i d e e f f e c t o f morphine i s t o reduce r e s p i r a t o r y c a p a b i l i t y . As a p e r s o n ' s p h y s i c a l p a i n i n c r e a s e s and t h e dosage o f morphine l i k e w i s e i n c r e a s e s t o compensate, t h a t p e r s o n i s b e i n g p u t i n a p o s i t i o n o f r i s k i n g pneumonia or r e s p i r a t o r y i n s u f f i c i e n c y . T h i s may r e s u l t i n t h e p e r s o n d y i n g b e f o r e he/she would have i f l e f t u n t r e a t e d . A s i m i l a r s i t u a t i o n a r i s e s f o r t h o s e whose cause o f d e a t h i s m a l n u t r i t i o n o r d e h y d r a t i o n . P r o v i d i n g f o o d and w a t e r i s o b l i g a t o r y i n most s i t u a t i o n s . However, not a l l p a t i e n t s b e n e f i t from t h e p r o v i s i o n o f f o o d and w a t e r . Lynn and O s t e r w e i s (1985) e x p l a i n t h a t p a t i e n t s who a r e c l o s e t o d e a t h seem t o d i e more c o m f o r t a b l y i f somewhat d e h y d r a t e d and i n n e g a t i v e n i t r o g e n b a l a n c e . When i s t h i s c h o i c e not t o i n t e r v e n e a c c e p t a b l e and not m a l i c e ? An i m p o r t a n t e t h i c a l dilemma, and one t h a t e s p e c i a l l y a f f e c t s R i v e r v i e w H o s p i t a l i n v o l v e s competency and i n f o r m e d c o n s e n t . In o r d e r f o r p a t i e n t s t o make f u l l y b i n d i n g d e c i s i o n s r e g a r d i n g h e a l t h c a r e , t h e y must 38 be a c t i n g v o l u n t a r i l y and w i t h o u t undue e x t e r n a l i n f l u e n c e , t h e y must be a d e q u a t e l y i n f o r m e d about t h e i r s i t u a t i o n and t h e l i k e l y e f f e c t s o f v a r i o u s c h o i c e s , and t h e y must be competent t o d e l i b e r a t e and choose i n a way t h a t i s b o t h r e a s o n a b l e and r e s p o n s i v e t o each p a t i e n t s own v a l u e s and c o n c e r n s (Lynn & O s t e r w e i s , 1985, p.205). A s c e r t a i n i n g t h a t p a t i e n t s a r e i n f o r m e d and t h a t t h e y r e a l l y u n d e r s t a n d t h e i r t r e a t m e n t c h o i c e s i s d i f f i c u l t i n t h e b e s t o f c i r c u m s t a n c e s . However, i n t h i s e m o t i o n a l l y c h a r g e d s i t u a t i o n o f l i f e and d e a t h , i t becomes even more d i f f i c u l t . F i n a l l y , what r i g h t s do m e n t a l l y i l l p a t i e n t s who a r e deemed inc o m p e t e n t have i n r e g a r d t o t h e i r own t r e a t m e n t ? Many who have been i n s t i t u t i o n a l i z e d f o r l o n g p e r i o d s o f t i m e have not had t h e o p p o r t u n i t y t o make c h o i c e s f o r t h e m s e l v e s . B e i n g p r e s e n t e d s u d d e n l y w i t h t h e p o s s i b i l i t y o f b e i n g i n v o l v e d i n d e c i d i n g t h e i r own t r e a t m e n t and c a r e i s s u e s may, i n f a c t , be more a n x i e t y - p r o v o k i n g . P a l l i a t i v e c a r e r e c o g n i z e s t h a t not o n l y i s t h e p a t i e n t t h e u n i t o f c a r e but a l s o t h e f a m i l y , and f a c i l i t a t e s t h e v a l u e s o f s e l f - d e t e r m i n a t i o n and p r o m o t i o n o f w e l l - b e i n g . However, a dilemma a r i s e s when t h e d y i n g p a t i e n t i s deemed inc o m p e t e n t t o make d e c i s i o n s f o r t h e m s e l v e s and t h e f a m i l y becomes t h e p a t i e n t ' s s p o k e s p e r s o n . How can t h e v a l u e s o f s e l f - d e t e r m i n a t i o n and p r o m o t i o n of w e l l - b e i n g be r e s p e c t e d 39 and g u i d e d e c i s i o n s when someone e l s e a c t s on b e h a l f o f t h e i n c o m p e t e n t p a t i e n t ? How does one r e s o l v e t h e dilemma t h a t a r i s e s when t h e b e s t c a r e f o r t h e i n c o m p e t e n t p a t i e n t c o n f l i c t s w i t h t h e w i s h e s o f t h e f a m i l y . I t i s t o o easy t o f o l l o w t h e w i s h e s o f t h e f a m i l y when t h e p a t i e n t i s v o i c e l e s s and p o w e r l e s s , l e a v i n g h i m s e l f / h e r s e l f w i t h no r e a l a d v o c a t e . As we have seen, t h e s e v a l u e dilemmas r a i s e more q u e s t i o n s t h a n answers. However, i t i s i n d i s c u s s i n g t h e s e q u e s t i o n s t h a t p r o g r e s s i s made. As m e d i c a l t e c h n o l o g y advances and t h e u n d e r l y i n g s o c i e t a l v a l u e s t o w a r d d e a t h b e g i n t o change, more q u e s t i o n s w i l l c o n f r o n t t h e h e a l t h c a r e p r o f e s s i o n a l and t h o s e w o r k i n g w i t h d y i n g p e o p l e . The f a c t t h a t p e o p l e d i e w i l l n e v e r change. However, t h e ap p r o a c h we t a k e t o h e l p them t h r o u g h t h a t p r o c e s s can change. One h e a l t h c a r e p r o f e s s i o n t h a t can a s s i s t w i t h t h i s movement i s s o c i a l work. The r o l e t h a t s o c i a l work can p l a y i n p a l l i a t i v e c a r e w i l l be d i s c u s s e d i n t h e n e x t s e c t i o n . 7. PALLIATIVE CARE AND SOCIAL WORK P a l l i a t i v e c a r e and t h e s o c i a l work p r o f e s s i o n have had a l o n g a s s o c i a t i o n . M i l l e t t (1989) s t a t e s t h a t i n d e e d s o c i a l w o r k e r s have been an i n t e g r a l p a r t o f t h e h o s p i c e movement. I n f a c t , Dame C e c i l y 'Saunders, t h e f o u n d e r o f t h e modern h o s p i c e movement was h e r s e l f a s o c i a l worker b e f o r e she became 4 0 a p h y s i c i a n . U n f o r t u n a t e l y , however, i n a 1988 s u r v e y c o n d u c t e d by Rodway and B l y t h e (1989) i t was f o u n d t h a t h a l f t h e p a l l i a t i v e c a r e f a c i l i t i e s i n Canada do not employ s o c i a l w o r k e r s . There i s c o n s i d e r a b l e work t o do i n e n s u r i n g and e n h a n c i n g t h e s o c i a l work r o l e i n t h i s v e r y i m p o r t a n t a r e a . I n most o f t h e l i t e r a t u r e one f i n d s agreement t h a t p a l l i a t i v e / h o s p i c e c a r e i s b e s t d e l i v e r e d by t h e c o l l a b o r a t i o n o f an i n t e r d i s c i p l i n a r y team. Each d i s c i p l i n e has a s p e c i a l c o n t r i b u t i o n t o make i n c a r r y i n g out t h e c a r i n g p h i l o s o p h y o f p a l l i a t i v e c a r e . O f t e n t h e v a r i o u s r o l e s become b l u r r e d , however, and i t i s i m p o r t a n t t o d e l i n e a t e what each p r o f e s s i o n can p o t e n t i a l l y p r o v i d e . What t h e n , can t h e p r o f e s s i o n o f s o c i a l work b r i n g t o p a l l i a t i v e c a r e ? E s s e n t i a l l y , t h e t a s k s o f t h e s o c i a l w orker i n p r o v i d i n g p a l l i a t i v e c a r e a r e t h e same as t h o s e w h i c h pervade a l l o f s o c i a l work. P i l s e c k e r (1979) p r o v i d e s a summary o f s o c i a l work t a s k s a p p r o p r i a t e t o h e l p i n g t h e t e r m i n a l l y i l l and t h e i r f a m i l i e s : 1) h e l p i n g p a t i e n t s and f a m i l i e s t o get i n t o u c h w i t h t h e i r f e e l i n g s and u n d e r s t a n d t h e i r b e h a v i o u r a l o p t i o n s ; 2) a s s i s t i n g p a t i e n t s and f a m i l i e s t o d e v e l o p and/or m a i n t a i n m e a n i n g f u l communication w i t h one a n o t h e r ; 3) a i d i n g p a t i e n t s and f a m i l i e s t o l o c a t e and u t i l i z e o t h e r r e s o u r c e s ; 4) h e l p i n g h e a l t h p r o f e s s i o n a l s i n v o l v e d w i t h t h e p a t i e n t / f a m i l y t o acknowledge t h e i r own f e e l i n g s , t o u n d e r s t a n d t h e f e e l i n g s and needs o f t h e p a t i e n t / f a m i l y , and t o l e a r n e f f e c t i v e and s e n s i t i v e ways o f m e e t i n g t h o s e needs. I n a c c o m p l i s h i n g t h e s e t a s k s , t h e s o c i a l w orker may f i n d h i m s e l f / h e r s e l f f u n c t i o n i n g i n a v a r i e t y o f r o l e s ( M i l l e t t , 1989; Rodway & B l y t h e , 1989; S t a r k & Johnson, 1983; Rusnack e t a l . , 1988). These r o l e s i n c l u d e : 1) C o u n s e l l o r - p r o v i d i n g p s y c h o s o c i a l i n t e r v e n t i o n t o p a t i e n t s and f a m i l i e s d u r i n g d y i n g p r o c e s s and g r i e f p r o c e s s ; 2) E n a b l e r - h e l p i n g p a t i e n t and f a m i l y t o t a l k about d e a t h and d y i n g , and r e a c h i n g out t o o t h e r s i n v o l v e d t o t a l k about impending d e a t h ; 3) E d u c a t o r - p r o v i d i n g i n s t r u c t i o n i n c o p i n g s k i l l s t o p a t i e n t and f a m i l y ; p r o v i d i n g i n s t r u c t i o n t o s t a f f r e g a r d i n g dynamics o f p e o p l e c o p i n g w i t h t e r m i n a l i l l n e s s ; 4) A d v o c a t e - r e p r e s e n t i n g t h e i n t e r e s t s o f t h e p a t i e n t when communication b r e a k s down between t h e p a t i e n t and s t a f f and/or f a m i l y (Rusnack e t a l . , 1988), and h e l p i n g them n a v i g a t e t h e h e a l t h c a r e system; 5) M e d i a t o r - s e r v e s as an i n t e r m e d i a r y i n c o n f l i c t u a l s i t u a t i o n s ; 42 6) P a r t i c i p a n t - p a r t i c i p a t i n g w i t h p a t i e n t i n d e f i n i n g t h e problem, a s s e s s i n g s u p p o r t systems, and i d e n t i f y i n g o p t i o n s ; 7) C o l l a b o r a t o r - p a r t i c i p a t i n g w i t h i n t h e i n t e r d i s c i p l i n a r y team i n d e f i n i n g , a s s e s s i n g , c a r r y i n g o u t , and e v a l u a t i n g p l a n s o f a c t i o n ; 8) M a i n t a i n e r - h e l p i n g m a i n t a i n d a i l y i n t e r s t a f f c ommunication; 9) S u s t a i n e r - c o n t r i b u t i n g t o t h e e m o t i o n a l s u p p o r t o f s t a f f ; 10) C o n s u l t a n t - d i s c u s s i n g w i t h a member o f a n o t h e r d i s c i p l i n e t h e most e f f e c t i v e way t h e y might h e l p i n a p a r t i c u l a r s i t u a t i o n . The p h i l o s o p h y o f p a l l i a t i v e c a r e i s v e r y much i n k e e p i n g w i t h s o c i a l work t r a d i t i o n o f b e i n g not o n l y c o n c e r n e d w i t h t h e w e l f a r e , c o m f o r t , and s a f e t y o f t h e i n d i v i d u a l b u t a l s o w i t h t h e f u n c t i o n i n g o f t h e f a m i l y system and t h e s o c i a l s e r v i c e network, and u l t i m a t e l y t h e i n t e r a c t i o n between t h e s e s p h e r e s ( S t a r k & Johnson, 1983) . S o c i a l w o r k e r s a r e u n i q u e l y q u a l i f i e d i n t a k i n g t h i s h o l i s t i c p e r s p e c t i v e . I n t h i s r e s p e c t , s o c i a l work s e r v e s an e c o l o g i c a l f u n c t i o n (Rusnack e t a l . , 1988). " I t seeks t o i n t e g r a t e c a r e w i t h i n h o s p i c e by b r i n g i n g t o g e t h e r t h e s e l f - c a r e o f p a t i e n t s w i t h t h e c a r i n g f u n c t i o n s o f f a m i l y , o t h e r h o s p i c e d i s c i p l i n e s and t h e s o c i a l s e r v i c e network" (Rusnack e t a l . , 1988, p . 5 ) . The m a j o r i t y o f s o c i a l work t i m e i s p r o b a b l y s p e n t i n d i r e c t s e r v i c e t o p a t i e n t s and f a m i l i e s . The moving away from a c t i v e c u r a t i v e t r e a t m e n t t o s u p p o r t i v e p a l l i a t i v e c a r e r e p r e s e n t s a v e r y d i f f i c u l t t i m e . T h i s t r a n s i t i o n r e q u i r e s a change i n f o c u s and t h a t i m p o r t a n t d e c i s i o n s be made. I t i s a h i g h l y e m o t i o n a l t i m e o f l i f e where a l l c o n c e r n e d s t r u g g l e between t h e d e s i r e t o m a i n t a i n hope and a c c e p t a n c e o f t h e i n e v i t a b l e d e a t h . There i s an i n c r e a s e d f o c u s on r e l i e f o f symptoms. Of c o u r s e symptoms go w e l l beyond t h e p h y s i c a l t o t h e p s y c h o s o c i a l , e m o t i o n a l , and s p i r i t u a l . I t i s i n t h e s e r e a l m s t h a t t h e s o c i a l work r o l e i s enhanced, as s o c i a l w o r k e r s a r e e d u c a t e d and t r a i n e d s p e c i f i c a l l y i n p s y c h o s o c i a l m a t t e r s . I t i s u n d e r s t o o d t h a t r e d u c i n g t h e p s y c h o s o c i a l p a i n o f an i n d i v i d u a l w i l l s u b s t a n t i a l l y reduce t h e p h y s i c a l p a i n , and t h u s t h e need f o r m e d i c a t i o n . I n t h i s r e s p e c t , Rusnack e t a l . (1988) suggest t h a t p a l l i a t i v e c a r e can be " c u r a t i v e f o r t h e p a t i e n t as t h e o b j e c t i v e o f such c a r e i s t o p r o v i d e a sense o f w e l l - b e i n g , ease and r e s t o r a t i o n " ( p . 4 ) . T h i s i s a h o p e f u l way o f r e f r a m i n g an u n f o r t u n a t e s i t u a t i o n i n o r d e r t o h e l p t h e p a t i e n t , s t a f f , and f a m i l y i n t h e i r s t r u g g l e . Rusnack e t a l . (1988) f u r t h e r adds t h a t p a l l i a t i v e c a r e can be a p r e v e n t i v e p r o c e s s f o r t h e f a m i l y by e n a b l i n g them t o c o n s t r u c t i v e l y cope w i t h p h y s i c a l and e m o t i o n a l a s p e c t s o f c a r i n g , g r i e f , l o s s , and bereavement. Thus, s o c i a l w o r k ers seek t o p r e v e n t problems which may a r i s e a f t e r t h e l o s s o f a 44 l o v e d one. H e l p i n g p a t i e n t s d i e i s d i f f i c u l t . I n few o t h e r a r e a s o f s o c i a l work p r a c t i c e i s t h e worker f a c e d w i t h i s s u e s such as s u f f e r i n g , s t r e s s , d e p r e s s i o n , h o p e l e s s n e s s , d e s p a i r , dependency, and f e a r . T h e r e f o r e , i t i s c r u c i a l f o r t h e s o c i a l w orker t o undergo a c r i t i c a l s e l f - a s s e s s m e n t b e f o r e e n g a g i n g i n t h i s work. I n o r d e r t o f e e l c o m f o r t a b l e w i t h , and t h u s e f f e c t i v e l y r e a c h out t o t h e d y i n g , one must come t o terms w i t h one's own f e e l i n g s about d e a t h . As w e l l , P i l s e c k e r (1979) s u g g e s t s t h a t we a l s o need t o l o o k a t our a b i l i t y t o t o l e r a t e u n c e r t a i n t y and a m b i g u i t y w h i c h abound i n t e r m i n a l c a r e . We must be f l e x i b l e enough t o go w i t h t h e u n c e r t a i n t y o f t h e d y i n g t r a j e c t o r y , and l e a r n t o " d i s c a r d our neat c o n c e p t u a l i z a t i o n s " ( P i l s e c k e r , 1979, p.371). There i s c o n s i d e r a b l e s t r e s s a s s o c i a t e d w i t h t h i s u n c e r t a i n t y . One can n e v e r be s u r e o f t h e c o u r s e o f t h e i l l n e s s . " Every r e m i s s i o n b r i n g s t h e hope o f l i f e , and e v e r y e x a c e r b a t i o n t h e f e a r o f d e a t h " (Brown, 1989, p.470) . I f as p r o f e s s i o n a l s we can l e a r n t o t o l e r a t e t h i s u n c e r t a i n t y , we w i l l be i n a b e t t e r p o s i t i o n t o h e l p t h e d y i n g p e r s o n and f a m i l y d e a l w i t h i t by m a i n t a i n i n g an open environment where i t can be d i s c u s s e d . Beyond d i r e c t s e r v i c e t o p a t i e n t s and t h e i r f a m i l i e s , t h e r e i s a v i t a l r o l e t h a t s o c i a l work can p l a y i n such a r e a s as e d u c a t i o n , research,' c o n s u l t a t i o n , and program and p o l i c y development. These r o l e s might b e s t be f u l f i l l e d i n c o l l a b o r a t i o n w i t h t h e h e a l t h c a r e team. However, t h e a u t h o r f e e l s t h a t we need t o a s s e r t t h e u n i q u e c o n t r i b u t i o n we can make as a p r o f e s s i o n . We need t o work beyond t h e c o n f u s i o n and s e l f - d o u b t t h a t c h a r a c t e r i z e s our p r o f e s s i o n , e s p e c i a l l y i n t h e s e c o n d a r y s e t t i n g o f t h e h o s p i t a l . 8. SUMMARY AND ORGANIZATION OF THE RESEARCH REPORT Ch a p t e r One has been an i n t r o d u c t i o n t o t h e r e p o r t . The most common scene f o r d e a t h i s i n t h e i n s t i t u t i o n , and t h i s has c r e a t e d an i n t e r e s t i n g c h a l l e n g e t o our h e a l t h c a r e system. T h i s i s e s p e c i a l l y t r u e as our s o c i e t y ages. We l i v e i n a s o c i e t y t h a t i s u n c o m f o r t a b l e w i t h d e a t h , a g i n g , and me n t a l i l l n e s s . I t has been argued t h a t t h e i n c r e a s i n g i n s t i t u t i o n a l i z a t i o n and s c i e n t i z a t i o n o f d e a t h has r e s u l t e d i n t h e d e p e r s o n a l i z a t i o n o f d e a t h . I n r e s p o n s e t o t h i s development t h e r e has i n r e c e n t y e a r s been a movement towards p r o v i d i n g more humane c a r e t o t h e d y i n g i n t h e form o f p a l l i a t i v e c a r e . P a l l i a t i v e c a r e i s a r e t u r n t o o l d v a l u e s and aims t o improve t h e q u a l i t y o f l i f e o f t h e t e r m i n a l l y i l l t h r o u g h c o m p a s s i o n a t e a t t e n t i o n t o p h y s i c a l , p s y c h o s o c i a l and s p i r i t u a l needs o f t h e p a t i e n t and f a m i l y . I n Canada, p a l l i a t i v e c a r e has been f o r t h e most p a r t h o s p i t a l - b a s e d . I t has been e v a l u a t e d as b e i n g e c o n o m i c a l l y c o s t - e f f e c t i v e t o t h e h e a l t h c a r e system, y e t i s s t i l l met w i t h r e s i s t a n c e because 46 o f p r o f e s s i o n a l , o r g a n i z a t i o n a l and e t h i c a l c o n c e r n s . The pr o b l e m i s t h e n one o f how t o expand t h e a v a i l a b i l i t y o f p a l l i a t i v e c a r e t o o t h e r i n s t i t u t i o n s s uch as a m e n t a l i n s t i t u t i o n . F i n a l l y , t h e r o l e t h a t s o c i a l work can p l a y i n a d v o c a t i n g f o r p a l l i a t i v e c a r e was d i s c u s s e d . C h a p t e r One has been an i n t r o d u c t i o n t o t h e r e p o r t . C h a p t e r Two o u t l i n e s i n more d e t a i l , u s i n g p r e v i o u s s t u d i e s and a n e c d o t e s , t h e c o n c e p t u a l framework f o r t h e s t u d y . F a c t o r s t h a t e f f e c t t h e t h e r a p e u t i c c a r e o f t h e d y i n g w i l l be e x p l o r e d i n d e t a i l as t o how t h e y may a f f e c t t h e p r o v i s i o n o f s e r v i c e s t o t h e d y i n g and t h e i r f a m i l i e s . C h a p t e r Three w i l l e x p l i c a t e t h e r e s e a r c h d e s i g n , e t h i c a l i s s u e s and problems e n c o u n t e r e d i n c a r r y i n g out t h e r e s e a r c h p r o j e c t . C h a p t e r Four w i l l o u t l i n e t h e major f i n d i n g s o f t h e t h e s i s r e s e a r c h . C h a p t e r F i v e w i l l i n c l u d e a d i s c u s s i o n o f t h o s e f i n d i n g s , as w e l l as e x p l o r e some i m p l i c a t i o n s o f t h e f i n d i n g s f o r p r a c t i c e , program and p o l i c y development a t R i v e r v i e w H o s p i t a l . A c o n c l u s i o n , i n c l u d i n g t h o u g h t s on t h e f u t u r e o f t h e p a l l i a t i v e / h o s p i c e movement as i t p e r t a i n s t o t h e l a r g e r h e a l t h c a r e system and t o R i v e r v i e w H o s p i t a l , w i l l end t h e r e p o r t . CHAPTER TWO L i t e r a t u r e Review 1. INTRODUCTION The l i t e r a t u r e r e v i e w has been d e v e l o p e d t o p l a c e t h e pro b l e m s t u d i e d i n t h e o r e t i c a l c o n t e x t . I n t h i s c h a p t e r , we w i l l b e g i n by a s k i n g t h e q u e s t i o n : do m e n t a l l y i l l p e o p l e e x p e r i e n c e d e a t h i n t h e same way t h a t "normal" p e o p l e do? S t u d i e s t h a t can h e l p t o answer t h i s q u e s t i o n w i l l be o u t l i n e d . Next we w i l l examine s i x f a c t o r s t h a t may be c r i t i c a l f o r an o r g a n i z a t i o n t o examine i f c o n s i d e r i n g p r a c t i c e and p o l i c y i s s u e s around d y i n g and d e a t h . L i t e r a t u r e r e l e v a n t t o each f a c t o r w i l l be p r e s e n t e d i n o r d e r t o g a i n a b e t t e r u n d e r s t a n d i n g o f why i t might be d i f f i c u l t t o implement knowledge o f t r e a t m e n t o f t h e d y i n g i n t o p r a c t i c e . The p a l l i a t i v e c a r e movement has g e n e r a t e d a b u r g e o n i n g o f books and a r t i c l e s w r i t t e n about t h e d y i n g i n d i v i d u a l and t h e d y i n g p r o c e s s . These, however, have m o s t l y been g e n e r a l r e v i e w s w i t h l i t t l e o r no r e s e a r c h o r have not i n c l u d e d s u b j e c t s w i t h m e n t a l i l l n e s s . Two promine n t s t u d i e s have c r e a t e d i n c r e a s e d i n t e r e s t i n d e a t h and d y i n g . The f i r s t s e r i e s o f s t u d i e s by E i s s l e r (1955) was landmark r e s e a r c h c h a r t i n g t h e f e e l i n g s o f t h e d y i n g p e r s o n , c o p i n g mechanisms used, and r e l a t i o n s h i p s ' t o t h e d o c t o r s . The drawback o f t h e s e 48 s t u d i e s , however, i s t h a t t h e y d e a l t o n l y w i t h a s e l e c t p o p u l a t i o n o f t e r m i n a l l y i l l i n d i v i d u a l s , t h e young, i n t e l l i g e n t , mature, and e m o t i o n a l l y r e s p o n s i v e . As w e l l , t h e work o f K u b l e r - R o s s c o n t a i n e d i n h e r book On  Death and D y i n g , w h i c h appeared i n 1969 sampled mature, m i d d l e - c l a s s , h a r d - w o r k i n g , v e r b a l p e o p l e who were d y i n g . L i k e t h e c a s e s i n E i s s l e r ' s book t h e s e c a s e s a r e not s u i t a b l e as models f o r t h e t r e a t m e n t o f t h e d y i n g p a t i e n t i n t h e g e n e r a l p o p u l a t i o n because t h e y do not r e f l e c t t h e s i g n i f i c a n t l i m i t a t i o n s i n r e l a t e d n e s s , e m o t i o n a l s t a b i l i t y , i n t e l l i g e n c e and accomplishment t h a t a r e f o u n d i n t h e g e n e r a l p o p u l a t i o n ( L e v i n s o n , 1975, p . 2 8 ) . I n d i v i d u a l s c h a r a c t e r i z e d by h i g h e r p s y c h o p a t h o l o g y have y e t t o b e n e f i t from t h e i n c r e a s e d i n t e r e s t i n t h e management o f t h e d y i n g p a t i e n t . " P e o p l e w i t h c h r o n i c m e n t a l i l l n e s s f a c e d e a t h i n d i f f e r e n t ways: some e x h i b i t t h e same r e a c t i o n s "normal" p e o p l e do, whereas o t h e r s r e a c t i n ways t h a t a r e u n i q u e t o t h e m e n t a l l y i l l " (Lanza, 1988, p.167) . D e s p i t e t h e p r e v a l e n c e o f c h r o n i c m e n t a l i l l n e s s , l i t t l e has been w r i t t e n about t h e ways t h e s e i n d i v i d u a l s e x p e r i e n c e t h e g r i e v i n g p r o c e s s and t h e i m p l i c a t i o n s o f t h e i r e x p e r i e n c e f o r h e a l t h c a r e p r o v i d e r s (Lanza, 1988). Many a u t h o r s have a t t e m p t e d t o d e s c r i b e t h e g r i e f p r o c e s s o f a normal d y i n g p e r s o n ( H i n t o n , 1967; K u b l e r - R o s s , 1 9 6 9 ) . However, few s t u d i e s have d e a l t s p e c i f i c a l l y w i t h t h e i s s u e o f how c h r o n i c a l l y i l l p s y c h i a t r i c p a t i e n t s f a c e d e a t h . F e i f e l (1955, 1956, 1963, 1973) i s perhaps one o f t h e o n l y a u t h o r s t o f o c u s on t h i s a r e a o f i n t e r e s t . He c o n d u c t e d a s e r i e s o f s t u d i e s r e g a r d i n g meaning o f d e a t h i n 'normal' and m e n t a l l y i l l p o p u l a t i o n s . I n 1955, he s u r v e y e d 85 p s y c h i a t r i c a l l y i l l p a t i e n t s r e p r e s e n t i n g a c r o s s - s e c t i o n o f d i a g n o s t i c c a t e g o r i e s r e s i d i n g i n a V e t e r a n s A d m i n i s t r a t i o n H o s p i t a l . The r e s u l t s showed t h a t most p a t i e n t s v i e w e d d e a t h as t h e i n e v i t a b l e f i n a l p r o c e s s o f l i f e , and as a t i m e o f r e s t and peace from t h e t u r m o i l o f l i f e . I n t e r e s t i n g l y , he a l s o f o u n d t h a t a pro m i n e n t theme was d e a t h by a t r a u m a t i c e vent and t h i s was i n t e r p r e t e d as r e f l e c t i n g i n n e r a g g r e s s i o n towards o t h e r s and s e l f . T h i s f i n d i n g may i n d i c a t e a d i f f e r e n c e i n t h e way p s y c h i a t r i c p a t i e n t s v iew d e a t h . When asked h y p o t h e t i c a l l y what t h e y would do i f t h e y c o u l d o n l y do one t h i n g b e f o r e d y i n g , p a t i e n t s ' most common re s p o n s e was t h a t t h e y would l i k e t o do something t o b e n e f i t o t h e r s . These r e s p o n s e s were found t o be i n c o n t r a s t t o normal groups who put s e l f - i n t e r e s t and s e l f - g r a t i f i c a t i o n b e f o r e r e l i g i o u s o r s o c i a l a c t i v i t i e s . F e i f e l c o n c l u d e s t h a t because o f s t r o n g g u i l t f e e l i n g s and a d e s i r e f o r peace o f mind, m e n t a l l y i l l p e o p l e may have a g r e a t e r need t h a n o t h e r s t o make amends t o o t h e r s b e f o r e d y i n g . I n a l a t e r s t u d y , F e i f e l and Herman (1973) i n v e s t i g a t e d t h e h y p o t h e s i s t h a t m e n t a l l y i l l p e r s o n s m a n i f e s t g r e a t e r f e a r o f d e a t h t h a n normal p e r s o n s , a t l e a s t a t u n c o n s c i o u s l e v e l s . The c o r o l l a r y p r o p o s i t i o n was t h a t t h e g r e a t e r degree o f e m o t i o n a l d i s t u r b a n c e , t h e more w i d e s p r e a d t h e f e a r o f d e a t h would be. T h e i r h y p o t h e s e s were based on t h e o b s e r v a t i o n t h a t i d e a s o f d e a t h r e c u r i n numerous n e u r o t i c p a t i e n t s and i n t h e h a l l u c i n a t i o n s o f many p s y c h o t i c p a t i e n t s . T h e r e f o r e , t h e i r s t u d y examined t h e i d e a t h a t p s y c h i a t r i c i l l n e s s may be a p a t h f o l l o w e d by e m o t i o n a l l y d i s t u r b e d p a t i e n t s t o deny c o n c e r n about d e a t h . The s u b j e c t s were 90 m e n t a l l y i l l p a t i e n t s , w h i l e t h e c o n t r o l group were 95 h e a l t h y i n d i v i d u a l s . The s u b j e c t s were asked t o r e s p o n d t o i t e m s d e a l i n g w i t h c o n s c i o u s , f a n t a s y , and b e l o w - t h e - l e v e l - o f - a w a r e n e s s r e a c t i o n s t o t h e i r own d e a t h , f r e q u e n c y o f d e a t h t h o u g h t s , and p e r c e p t i o n o f l i f e - a f t e r - d e a t h . The a u t h o r s f o u n d t h a t no s i g n i f i c a n t d i f f e r e n c e s were found on any o f t h e t h r e e l e v e l s examined. Remarkably, what was most a p p a r e n t was t h e s i m i l a r i t y o f r e s p o n s e i n t h e two groups. The p a t t e r n i n b o t h groups was d i s a v o w a l o f f e a r o f d e a t h a t t h e c o n s c i o u s l e v e l , a m b i v a l e n c e a t t h e f a n t a s y l e v e l , and a p p r e h e n s i o n and n e g a t i v i t y a t t h e l e v e l below awareness. There was a l s o no s i g n i f i c a n t d i f f e r e n c e between t h e groups on e i t h e r f r e q u e n c y o f d e a t h t h o u g h t s o r view o f p e r s o n a l f a t e a f t e r d e a t h . B o t h i n d i c a t e d t h e y t h o u g h t about d e a t h " o c c a s i o n a l l y " . F e i f e l and Herman (1973) c o n c l u d e d t h a t t h e i r s t u d y d i d not s u p p o r t e i t h e r o f t h e p r e d i c t i o n s . There was no s i g n i f i c a n t d i f f e r e n c e between m e n t a l l y i l l and normal s u b j e c t s i n t h e i r r e a c t i o n s t o d e a t h and t h a t t h e degree o f m e n t a l i l l n e s s was not a major f a c t o r r e l a t i n g t o f e a r o f d e a t h . They s u g g e s t e d t h a t t h e dominance o f c u l t u r a l i m p r i n t i n g w i t h r e g a r d t o t h e o u t l o o k on d e a t h appears t o be s u ch t h a t i t o v e r r i d e s any d i f f e r e n c e i n e m o t i o n a l h e a l t h . I n a p i l o t s t u d y by C h r i s t (1965) t o d e t e r m i n e how a group o f g e r i a t r i c p s y c h i a t r i c p a t i e n t s f e l t about t h e t o p i c o f d e a t h , one hundred a c u t e p s y c h i a t r i c g e r i a t r i c p a t i e n t s a d m i t t e d t o San F r a n c i s c o G e n e r a l H o s p i t a l were examined. He f o u n d t h a t s i x t y - t w o c o u l d g i v e r e l e v a n t answers t o most o f t h e q u e s t i o n s on t h e i r a t t i t u d e s t o w a r d d e a t h . F u r t h e r m o r e , t h e p a t i e n t s were f e a r f u l o f d e a t h but were w i l l i n g t o d i s c u s s i t , even r e l i e v e d t o do so. Even t h o s e w i t h t e r m i n a l i l l n e s s were a b l e t o d i s c u s s i t . H i s f i n d i n g s seem t o be i n a c c o r d a n c e w i t h F e i f e l ' s work i n t h i s a r e a . Templer (197 6) c o n c l u d e s from a r e v i e w o f s t u d i e s t h a t t h e r e a r e two g e n e r a l d e t e r m i n a n t s o f degree o f d e a t h a n x i e t y : one i s g e n e r a l p s y c h o l o g i c a l h e a l t h , t h e o t h e r i s l i f e e x p e r i e n c e s c o n c e r n i n g t h e t o p i c o f d e a t h ( L o n e t t o & Templer, 1986) . I n r e g a r d t o p s y c h o l o g i c a l h e a l t h , t h e r e s u l t s o f s c o r e s o f s t u d i e s almost i n v a r i a b l y show d e a t h a n x i e t y t o be a s s o c i a t e d w i t h p a t h o l o g y . In t h e s t u d i e s Templer r e v i e w s , 52 p s y c h i a t r i c p a t i e n t s do s c o r e h i g h e r t h a n normal i n d i v i d u a l s . T h i s i s i n c o n t r a d i c t i o n t o F e i f e l and Herman's s t u d i e s , as w e l l as C h r i s t ' s . T h e r e f o r e , t h i s a p p a r e n t c o n t r a d i c t i o n s u p p o r t s t h e n o t i o n t h a t n o t much i s r e a l l y known about how p s y c h i a t r i c p a t i e n t s e x p e r i e n c e t h e meaning o f d e a t h . Based on t h e s e l i m i t e d number o f s t u d i e s i t may be s a i d t h a t t h e r e a r e v a r i a t i o n s i n t h e way t h e m e n t a l l y i l l f a c e d e a t h , e s p e c i a l l y i n t h e need t o make amends, and t h a t t h i s i s a l s o t r u e among t h o s e who have not s u f f e r e d from mental i l l n e s s . Moreover, i t appears t h a t t h e r e a r e more s i m i l a r i t i e s t h a n d i f f e r e n c e s i n t h e ways t h a t t h e m e n t a l l y i l l and t h o s e who a r e not m e n t a l l y i l l a p p r o a c h d e a t h . I t would be f a i r t o say t h a t more r e s e a r c h i s n e c e s s a r y t o i d e n t i f y and d i s t i n g u i s h j u s t what t h e d i f f e r e n c e s a r e t o enhance d i r e c t p r a c t i c e . L e v i n s o n (1975) a l s o b e l i e v e s t h a t t h e p r o g r e s s t h a t has been made i n t h e knowledge o f t h e o r y and p r a c t i c e have not r e a c h e d t h o s e p a t i e n t s w i t h a h i g h e r degree o f p s y c h o p a t h o l o g y . H i s c h a l l e n g e i s t o b r i n g t h e t r e a t m e n t o f t h e d y i n g p a t i e n t t o a l l i n d i v i d u a l s r e g a r d l e s s o f p s y c h o p a t h o l o g y , s o c i o e c o n o m i c s t a t u s , r a c e o r r e l i g i o n . 2. CONCEPTUAL FRAMEWORK AND ASSUMPTION In o r d e r t o a d d r e s s t h e c h a l l e n g e t h a t L e v i n s o n (1975) has s e t f o r t h , o b s t a c l e s i n t h e t r e a t m e n t o f t h e s e d y i n g 53 p a t i e n t s must be c a r e f u l l y d e l i n e a t e d and c o n f r o n t e d . Because of t h e n o n - t r a d i t i o n a l n a t u r e o f p a l l i a t i v e c a r e , a unique s i t u a t i o n a r i s e s when you t r y t o implement t h e c o n c e p t i n a f i e l d s e t t i n g . "The m e d i c a l c a r e o f t h e d y i n g p a t i e n t s has expanded beyond pure m e d i c a l t e c h n o l o g y i n t o t h e r e a l m o f p s y c h o s o c i a l c o n s i d e r a t i o n " (Gerber, 1988, p . 1 3 ) . A l t h o u g h t h e need f o r p s y c h o l o g i c a l h e l p d u r i n g t h e d y i n g p r o c e s s i s w e l l a p p r e c i a t e d i n concept by p h y s i c i a n s , n u r s e s , and o t h e r p r o f e s s i o n a l s t a f f , t h e a c t u a l i m p l e m e n t a t i o n o f e m o t i o n a l c a r e i n t h e s e c i r c u m s t a n c e s i s a l l t o o o f t e n w a n t i n g o r i n a d e q u a t e ( K l a g s b r u n , 1988). In t h i s t h e s i s , we w i l l d i s c u s s s i x major and r e a l i s t i c i s s u e s t h a t i n f l u e n c e t h e t r a n s i t i o n from knowledge and t h e o r y t o p r a c t i c e i n c a r e o f t h e d y i n g . These v a r i a b l e s w i l l form t h e c o n c e p t u a l framework f o r t h e r e s e a r c h p r o j e c t . By e x a m i n i n g each o f t h e s e f a c t o r s i n t h i s s t u d y we can d e t e r m i n e w h i c h p l a y a r o l e i n t h e way t h e d y i n g p a t i e n t and t h e i r f a m i l y a r e b e i n g c a r e d f o r a t R i v e r v i e w H o s p i t a l . They have been chosen because t h e y appear i n t h e l i t e r a t u r e f r e q u e n t l y , and form a framework t h a t seems t o c o v e r most o f t h e major i s s u e s t h a t may f a c e p r a c t i t i o n e r s as t h e y work w i t h d y i n g p a t i e n t s and t h e i r f a m i l i e s . They a r e : (1) p e r s o n a l and p r o f e s s i o n a l d e a t h a n x i e t y (2) t h e o r g a n i z a t i o n o f t h e h o s p i t a l system and i t s i n h e r e n t p r e s s u r e s 54 (3) r o l e e x p e c t a t i o n s p l a c e d upon t h e h e a l t h c a r e p r o f e s s i o n a l (4) e d u c a t i o n and t r a i n i n g i n c a r i n g f o r d y i n g p e r s o n s and t h e i r f a m i l i e s (5) i s s u e s o f teamwork amongst h e a l t h c a r e p r o f e s s i o n a l s (6) t h e conveyance and exchange o f d i a g n o s t i c i n f o r m a t i o n . By no means do t h e s e i s s u e s account f o r a l l t h e f a c t o r s t h a t may c o n f r o n t p r a c t i t i o n e r s . As w e l l , t h e s e f a c t o r s must be r e g a r d e d as not b e i n g m u t u a l l y e x c l u s i v e b u t as o v e r l a p p i n g and i n t e r t w i n e d . A l t h o u g h t h e s e f a c t o r s have been e x t r a c t e d from t h e m e d i c a l , s o c i o l o g i c a l , and p s y c h o l o g i c a l l i t e r a t u r e r e g a r d i n g d y i n g i n m e d i c a l i n s t i t u t i o n s , an a s s u m p t i o n i s b e i n g made by t h e a u t h o r t h a t t h e y w i l l be e q u a l l y v a l i d f o r a m e n t a l i n s t i t u t i o n , as t h e s e i n s t i t u t i o n s a l s o o p e r a t e under a m e d i c a l model and a r e o r g a n i z e d i n a s i m i l a r f a s h i o n . 3. FACTOR ONE: Death A n x i e t y I n t h e l i t e r a t u r e , we can f i n d s e v e r a l b e g i n n i n g e x p l a n a t i o n s as t o why i t i s d i f f i c u l t t o work w i t h d y i n g p a t i e n t s and t h e i r f a m i l i e s , and why t h e i r needs may not be a d e q u a t e l y a d d r e s s e d . The f i r s t i s t o c o n s i d e r t h e f e a r o f d e a t h t h a t h e a l t h c a r e ' p r o f e s s i o n a l s may have as i n d i v i d u a l s o u t s i d e o f t h e i r p r o f e s s i o n a l r o l e . As we have d i s c u s s e d i n 55 C h a p t e r One, t h e p e r s o n a l a n x i e t i e s o f h e a l t h c a r e p r o f e s s i o n a l s a r e l a r g e l y dependent on t h e a t t i t u d e s p r e v a l e n t i n s o c i e t y a t l a r g e . F e a r o f d e a t h i s a f a i r l y u n i v e r s a l phenomenon. The f a c t t h a t d e a t h i s not as v i s i b l e as when i n d i v i d u a l s d i e d i n t h e i r own home i s c i t e d as a l i k e l y cause o f our r e l i a n c e on d e f e n s e mechanisms when c o n f r o n t e d w i t h d e a t h and t h e a n x i e t y i t p r o v o k e s . The d e f e n s e mechanisms of a v o i d a n c e , d e n i a l , p r o j e c t i o n , r u m i n a t i o n , and i s o l a t i o n a r e q u i t e commonly employed by p e o p l e i n t h e f a c e o f d e a t h , e i t h e r t h e i r own o r someone e l s e ' s . The p h i l o s o p h e r Jacques Choron has d e l i n e a t e d t h r e e components t o t h e f e a r o f d y i n g : t h e f e a r o f d y i n g , t h e f e a r o f what happens a f t e r d e a t h , and t h e f e a r o f c e a s i n g t o be (McCarthy, 1980) . He s u g g e s t s t h a t t h e f e a r o f d y i n g and c e a s i n g t o be i n v o l v e a m y r i a d o f f a c t o r s e x t e n d i n g from a f e a r o f p a i n and s u f f e r i n g , h e l p l e s s n e s s , dependency, and l o s s o f c o n t r o l o f one's p h y s i c a l and m e n t a l a b i l i t i e s a t one end o f t h e continuum, t o f e a r o f abandonment and o f b e i n g s e p a r a t e d from l o v e d ones and l o s s o f one's l o v e f o r o t h e r s a t t h e o t h e r end. Templer (1986) a l s o has s u g g e s t e d t h a t d e a t h a n x i e t y can be composed o f t h r e e t o f i v e i ndependent components and t h a t t h e most c o n s i s t e n t l y r e p o r t e d a r e : 1. Concern about b o t h t h e c o g n i t i v e and e m o t i o n a l impact of d y i n g and d e a t h 5 6 2 . A n t i c i p a t i o n and f e a r o f t h e p h y s i c a l a l t e r a t i o n b r o u g h t about by d y i n g and d e a t h 3 . Awareness o f t h e f i n i t e t i m e between b i r t h and d e a t h and o f t h e r a p i d i t y o f i t s passage 4 . Concern about t h e s t r e s s and p a i n accompanying i l l n e s s , d i s e a s e , and d y i n g ( L o n e t t o & Templer, 1 9 8 6 , p . 4 ) . L o n e t t o and Templer ( 1 9 8 6 ) a s s e r t t h a t , b a s e d on s t u d i e s , t h e s e d e s c r i p t i v e components r e p r e s e n t s o u r c e s r a t h e r t h a n s u r f a c e d i m e n s i o n s o f d e a t h a n x i e t y . Death a n x i e t y i s c l e a r l y a f undamental human a n x i e t y , w h i l e i t s components have j o i n e d t o g e t h e r i n such a way as t o make i t a d i s t i n c t i v e form o f a n x i e t y . McCarthy ( 1 9 8 0 ) s u g g e s t s t h a t t h e e x p r e s s i o n o f t h e s e l f i n t h e d e f e n s e a g a i n s t d e a t h a n x i e t y c o r r e s p o n d s t o t h e i n d i v i d u a l ' s a t t i t u d e s towards l i f e r o l e s . What t h e above d i s c u s s i o n s u g g e s t s i s t h a t t h e v a r i a b l e o f d e a t h a n x i e t y i s a v e r y u n s t a b l e one. There seems t o be no agreement i n t h e l i t e r a t u r e as t o e x a c t l y what d e a t h a n x i e t y i s , a l t h o u g h a c c o r d i n g t o M a r s h a l l ( 1 9 8 2 ) i n t h e a r e a o f d e a t h and d y i n g t h e r e i s an " i n o r d i n a t e emphasis on m e a s u r i n g t h e f e a r o f d e a t h " ( p . 3 0 3 ) . I s d e a t h a n x i e t y a m u l t i d i m e n s i o n a l c o n s t r u c t o r a s i n g l e c o n s t r u c t ? Does d e a t h a n x i e t y d i f f e r from s e p a r a t i o n a n x i e t y o r g e n e r a l a n x i e t y , o r i s i t s i m p l y a p a r t o f t h e s e a n x i e t i e s ? A r e f e e l i n g s o f d e a t h a n x i e t y s i g n i f i c a n t l y d i f f e r e n t i f t h e y a r e founded on d i f f e r e n t 57 component c o m b i n a t i o n s , o r a r e t h e s e f e e l i n g s s i m i l a r r e g a r d l e s s o f wh i c h components combine? There i s a need t o d e s i g n b e t t e r methods t o t a p i n t o t h i s i n f o r m a t i o n . A c c o r d i n g t o S c h u l z (1978) many o f t h e i n c o n s i s t e n c i e s i n t h e d e a t h a n x i e t y d a t a w i l l p r o b a b l y be c l a r i f i e d once r e s e a r c h e r s b e g i n p a y i n g c l o s e a t t e n t i o n t o t h e components o f d e a t h a n x i e t y i n s t e a d o f t r e a t i n g i t as a u n i t a r y c oncept ( i n L o n e t t o and Templer, 1986). F u r t h e r m o r e , r e s e a r c h has been i n h i b i t e d because n e i t h e r t h e o r e t i c a l o r e m p i r i c a l e v i d e n c e has i n d i c a t e d what l e v e l o f f e a r i s "normal" o r " p a t h o l o g i c a l " ( M a r s h a l l , 1982). More s t u d i e s a r e needed, e s p e c i a l l y t h o s e u s i n g o l d e r s u b j e c t s as w e l l as s u b j e c t s from v a r i o u s s o c i a l and e t h n i c b a c k g r o u n d s . There has been a g e n e r a l p r o b l e m i n v a l i d a t i n g r e s e a r c h done on d e a t h a n x i e t y because t h e r e a r e o n l y a few measures a g a i n s t w h i c h c r o s s - v a l i d a t i o n can be a t t e m p t e d . H a v i n g s a i d t h a t , v a r i o u s f i n d i n g s r e g a r d i n g p r o f e s s i o n a l b e h a v i o u r w i t h d e a t h a n x i e t y , and v a r i o u s c o r r e l a t e s o f d e a t h a n x i e t y w i l l be d i s c u s s e d . T h i s fundamental human a n x i e t y about d e a t h and d y i n g p r e v a l e n t i n our s o c i e t y becomes couched i n p r o f e s s i o n a l terms i n t h e s e l e c t i v e way d i f f e r e n t p o p u l a t i o n s o f p a t i e n t s who a r e c r i t i c a l l y i l l g et t r e a t e d . F o r example, a c c o r d i n g t o Weisman (1972), c a n c e r p a t i e n t s a r e vi e w e d d i f f e r e n t l y from c a r d i a c p a t i e n t s w i t h t h e same l i m i t e d l i f e e x p e c t a n c y . A l t h o u g h 58 c a n c e r p a t i e n t s a r e v i e w e d t o be h o p e l e s s l y i l l , c a r d i a c p a t i e n t s a r e v i e w e d t o be s e r i o u s l y i l l w i t h h a v i n g good chances o f r e c o v e r y . Other p a t i e n t p o p u l a t i o n s a l s o f i l l p r o f e s s i o n a l s w i t h a n x i e t y : t h e m e n t a l l y i l l and t h e f r a i l e l d e r l y a r e c a s e s i n p o i n t ( S t o c k w e l l , 1969). S t e r e o t y p e s about t h e a g i n g p e r s o n may impede needed p r o f e s s i o n a l i n t e r v e n t i o n . S i n c e i t i s c o n s i d e r e d " n a t u r a l " f o r an o l d p e r s o n t o d i e , t h e consequent s t e r e o t y p e d e x p e c t a t i o n may be t h a t t h e d y i n g o l d e r p e r s o n needs m i n i m a l , i f any, c o m f o r t o r s u p p o r t . The d i s o r i e n t e d , o r t h e m e n t a l l y i l l , d y i n g p e r s o n may be d e n i e d a p p r o p r i a t e c a r e because t h e y a r e a l r e a d y 'out o f i t ' . T h e r e f o r e , t h e j u x t a p o s i t i o n o f t h e s e two l a b e l s - t o be o l d and m e n t a l l y i l l - w i t h d y i n g must have tremendous impact on t h e t r e a t m e n t t h e y r e c e i v e . In p a r t i c u l a r , t h e l i t e r a t u r e p e r t a i n i n g t o p h y s i c i a n s ' h a n d l i n g o f t h e d y i n g p a t i e n t r e v e a l s a d i s t u r b i n g p a t t e r n . The most t y p i c a l b e h a v i o u r o f t h e p h y s i c i a n i s t o e m o t i o n a l l y and p h y s i c a l l y withdraw from t h e t e r m i n a l l y i l l p a t i e n t ( G l a s e r and S t r a u s s , 1968). I n t h e case o f t h e m e n t a l l y i l l d y i n g p a t i e n t , i t may be b e l i e v e d t h a t t h e p e r s o n has a l r e a d y s u f f e r e d a " p s y c h i c d e a t h " b e f o r e t h e c e s s a t i o n o f t h e b i o l o g i c a l f u n c t i o n i n g ( F e i f e l , 1955). G l a s e r and S t r a u s s (1968) r e p o r t t h a t depending on t h e p h y s i c i a n ' s e s t i m a t e o f how l o n g t h e p a t i e n t w i l l l i v e , a l most complete p h y s i c a l and e m o t i o n a l w i t h d r a w a l from t h e p a t i e n t w i l l o c c u r . As t h e impending d e a t h draws n e a r e r , t h e p h y s i c i a n w i l l remove h i m s e l f o r h e r s e l f from t h e s i t u a t i o n and o n l y have m i n i m a l n e c e s s a r y c o n t a c t . The consequent b e h a v i o u r s we demonstrate i n r e s p o n s e t o t h i s p e r s o n a l u n e a s i n e s s have been shown t o n e g a t i v e l y impact t h e t h e r a p e u t i c c a r e o f t h e d y i n g p a t i e n t and t h e i r f a m i l i e s (Hamric, 1977) . The moving away from t h e d y i n g p a t i e n t has been o b s e r v e d t o produce u n n e c e s s a r y d i s c o m f o r t f o r t h e p a t i e n t a t a t i m e when such c o n t a c t and c o m f o r t a r e most needed. As F e i f e l (1963) s u g g e s t s , some p a t i e n t s have more p a i n from sudden e m o t i o n a l i s o l a t i o n and r e j e c t i o n t h a n from t h e i l l n e s s i t s e l f (Gerber, 1988). W i t h d r a w a l does not n e c e s s a r i l y reduce t h e a n x i e t y t h e h e a l t h c a r e p r o f e s s i o n a l has about d e a t h (Gerber, 1988). I t i s n e c e s s a r y t h a t t h e c a r e g i v e r manage t h o s e f e e l i n g s w i t h i n h i m s e l f o r h e r s e l f . O t h e r w i s e t h o s e f e e l i n g s might r e s u l t i n a v o i d i n g t h e d y i n g p a t i e n t o r d i s t a n c i n g from them. These b e h a v i o u r s f u r t h e r r e s u l t i n poor communication, f r a g m e n t a t i o n o f e f f o r t , o r l a c k o f teamwork i n c a r i n g f o r t h e d y i n g p a t i e n t . I n t e r e s t i n g l y , F e i f e l ' s work s u g g e s t s t h a t p h y s i c i a n s as a group have above average o r e x c e s s i v e f e a r s o f d e a t h , and t h a t t h e y may choose a c a r e e r i n m e d i c i n e as a way of d e a l i n g w i t h t h e s e f e a r s (Weiner, 1970) . L i p p i n c o t t (1972) even goes so f a r as c a l l i n g t h i s w i t h d r a w a l a " c o n s p i r a c y o f s i l e n c e " between p h y s i c i a n and p a t i e n t , each h a v i n g needs t o deny t h e i n e v i t a b l e . However, 60 s t u d i e s show t h a t t h e " p o t e n t i a l e f f e c t s f o r p h y s i c i a n s who i n f o r m p a t i e n t s a r e l e s s p e r s o n a l a n x i e t y , more c o n f i d e n c e when a case i s d i s c u s s e d w i t h c o l l e a g u e s and i n c r e a s e d e m o t i o n a l s t r e n g t h t o communicate w i t h t h e d y i n g p a t i e n t " (Gerber, 1988, p. 1 6 ) . Informed p a t i e n t s w i l l f e e l l e s s i s o l a t e d , w i l l have more c o n f i d e n c e i n t h e i r c a r e p r o v i d e r s and w i l l have t h e o p p o r t u n i t y t o s h a r e p e r s o n a l f e e l i n g s and work towards a m e a n i n g f u l and d i g n i f i e d d e a t h (Gerber, 1988). Templer has c o n d u c t e d a v a r i e t y o f s t u d i e s i n o r d e r t o d e t e r m i n e c o r r e l a t e s o f d e a t h a n x i e t y . The i n s t r u m e n t he used was h i s own Templer Death A n x i e t y S c a l e (DAS) w h i c h he t e s t e d and d e v e l o p e d i n 1969. I n o r d e r t o t e s t t h e v a l i d i t y o f t h e DAS he a d m i n i s t e r e d t h e s c a l e embedded i n t h e MMPI. He employed t h e MMPI because t h i s t e s t c o n t a i n e d t h r e e well-known a n x i e t y s c a l e s , t h e M a n i f e s t A n x i e t y S c a l e , t h e Welsh A n x i e t y S c a l e , and t h e Welsh A n x i e t y Index. " I f t h e DAS c o r r e l a t e d as h i g h l y w i t h t h e s e s c a l e s as t h e y c o r r e l a t e w i t h one a n o t h e r , t h e n i t c o u l d be argued t h a t t h e DAS measures a n x i e t y i n g e n e r a l r a t h e r t h a n d e a t h a n x i e t y i n p a r t i c u l a r " ( L o n e t t o & Templer, 1986, p.125). I t was found t h a t d e a t h a n x i e t y c o r r e l a t e d p o s i t i v e l y w i t h g e n e r a l a n x i e t y , a l t h o u g h n ot as h i g h l y as t h e i n t e r c o r r e l a t i o n s among s c a l e s o f t h e g e n e r a l a n x i e t y t h e m s e l v e s . T h e r e f o r e , DAS i s not j u s t a n o t h e r measure o f g e n e r a l a n x i e t y . T h i s i s an i m p o r t a n t p o i n t t o c l a r i f y b e f o r e l o o k i n g a t t h e s t u d i e s . 61 I n one o f t h e e a r l i e r s t u d i e s i n 1971, Templer e t a l . e v a l u a t e d t h e degree o f d e a t h a n x i e t y as a f u n c t i o n o f age and sex i n d i v e r s e p o p u l a t i o n s . They sampled a v a r i e t y o f p e o p l e from a c r o s s t h e age range i n c l u d i n g u p p e r - m i d d l e c l a s s (n=283) , low-income a i d e s i n a N e u r o p s y c h i a t r i c I n s t i t u t e (n=125), heterogeneous p s y c h i a t r i c p a t i e n t s (n=137), and h i g h s c h o o l s t u d e n t s (n=743). Templer e t a l . (1971) f o u n d t h a t t h e r e was no s i g n i f i c a n t r e l a t i o n s h i p between DAS s c o r e s and age f o r any group b e i n g s t u d i e d . They o b s e r v e d t h a t t h i s i s p e rhaps i n c o n s i s t e n t w i t h a "commonsense" v i e w t h a t t h e c l o s e r a p e r s o n approaches t h e end o f l i f e , t h e more f e a r f u l o f d e a t h he o r she becomes. They do s u g g e s t , however, t h a t t h i s f i n d i n g i s c o n s i s t e n t w i t h c l i n i c a l r e p o r t s ( i e . K u b l e r - R o s s , 1969; Weisman, 1972) t h a t d e f e n s e mechanisms o f d e n i a l and r e p r e s s i o n a r e u sed e x t e n s i v e l y as a means o f c o p i n g w i t h d e a t h a n x i e t y a c r o s s a l a r g e age range. L o n e t t o and Templer (1986) have s u g g e s t e d a f t e r a r e v i e w o f v a r i o u s s t u d i e s t h a t an i n v e r s e r e l a t i o n s h i p i s more l i k e l y when e l d e r l y s u b j e c t s a r e i n c l u d e d . F o r a l l t h e groups s t u d i e d f e males e x h i b i t e d h i g h e r DAS s c o r e s t h a n males. A l t h o u g h t h e e x p l a n a t i o n f o r t h i s r e s u l t was u n c l e a r , L o n e t t o and Templer (1986) s p e c u l a t e d t h a t t h e g r e a t e r degree o f e x p r e s s e d d e a t h a n x i e t y i n f e m a l e s may be a p r o d u c t o f a c u l t u r e i n w h i c h males have t r a d i t i o n a l l y been e x p e c t e d t o be b r a v e , and not e x p r e s s emotion. Templer o f f e r s 62 a l i s t o f s t u d i e s t h a t a l s o have r e p e a t e d l y r e p o r t e d t h i s f i n d i n g . " I n f a c t , gender may be one o f t h e v a r i a b l e s t h a t most c o n s i s t e n t l y r e l a t e s t o d e a t h a n x i e t y , n o t o n l y i n N o r t h A m e r i c a b u t c r o s s - c u l t u r a l l y as w e l l " ( L o n e t t o & Templer, 1986, p . 1 1 ) . I n t e r e s t i n g l y , G i l l i l a n d (1982) f o u n d h i g h e r f e m a l e DAS s c o r e s f o r a g e n e r a l p o p u l a t i o n b u t v e r y s i m i l a r means f o r t h e sexes i n a p s y c h i a t r i c p o p u l a t i o n . L o n e t t o and Templer (1986) a l s o r e p o r t t h a t s e v e r a l s t u d i e s have i n d i c a t e d d e a t h a n x i e t y t o be i n v e r s e l y r e l a t e d t o income and e d u c a t i o n a l l e v e l . I t would appear t h a t t h e r e i s a s l i g h t t e n d e n c y f o r t h e more advantaged members o f s o c i e t y t o s c o r e l o w e r on t h e DAS. B e i n g w h i t e , male, h i g h l y e d u c a t e d , from an i n t a c t f a m i l y , w i t h a good income and a h i g h e r IQ t e n d s t o be a s s o c i a t e d w i t h l o w e r d e a t h a n x i e t y ( L o n e t t o & Templer, 1986, p . 1 3 ) . I n r e g a r d s t o o c c u p a t i o n , L o n e t t o and Templer r e p o r t t h a t d e a t h a n x i e t y does not appear t o v a r y g r e a t l y . An i n t e r e s t i n g f i n d i n g o f M u l h o l l a n d (1980, 1982) was t h a t t h e d e a t h a n x i e t y o f n e p h r o l o g y s o c i a l w o r k ers and s o c i a l w o r k e r s p r o v i d i n g s e r v i c e s i n a non-death-and-dying p o p u l a t i o n d i d not s i g n i f i c a n t l y d i f f e r . F u r t h e r m o r e , w i t h t h e n e p h r o l o g y s o c i a l worker group, t h e r e was no r e l a t i o n s h i p between DAS s c o r e and number o f y e a r s worked w i t h t h e s e d y i n g p a t i e n t s . I t i s a l s o r e p o r t e d by W h i t t e n b e r g (1980) t h a t m e d i c a l , s u r g i c a l , 63 m e d i c a l / s u r g i c a l , and ICU n u r s e s d i d not s i g n i f i c a n t l y d i f f e r , n o r d i d d e a t h a n x i e t y d i f f e r as a f u n c t i o n o f number o f t e r m i n a l p a t i e n t s c a r e d f o r i n p r e v i o u s months o r whether o r not a d e a t h had been w i t n e s s e d ( L o n e t t o & Templer, 1986). Some d i f f e r e n c e s as a f u n c t i o n o f o c c u p a t i o n o r f i e l d o f s t u d y have been fo u n d ; however, t h e a s s o c i a t i o n c o u l d be m e d i a t e d by c e r t a i n p e r s o n a l i t y f a c t o r s . "For example, Thorson (1977), u s i n g t h e Edwards P e r s o n a l P r e f e r e n c e S c h e d u l e , d e m o n s t r a t e d t h a t d e a t h a n x i e t y i s p o s i t i v e l y a s s o c i a t e d w i t h s u c c o r a n c e , m a j o r i n g i n s o c i a l work, and b e i n g f e m a l e ; i t i s n e g a t i v e l y a s s o c i a t e d w i t h endurance, a g g r e s s i o n , e x h i b i t i o n i s m , b e i n g male, and m a j o r i n g i n b u s i n e s s " ( L o n e t t o & Templer, 1986, pp.31-32). L o n e t t o and Templer (1986) f u r t h e r c o n c l u d e t h a t t h e h i g h l y d e a t h -a n x i o u s p e r s o n seems t o be c h a r a c t e r i z e d by g r e a t e r e m o t i o n a l s e n s i t i v i t y . Perhaps i t c o u l d be s u g g e s t e d t h a t e m o t i o n a l l y s e n s i t i v e p e o p l e e x p e r i e n c e " a n x i e t y " more f r e q u e n t l y i n r e l a t i o n t o any t o p i c , because t h e y a r e more s e n s i t i v e t o t h e i r e m o t i o n a l s t a t e . The number o f y e a r s o f work e x p e r i e n c e may a l s o be a f a c t o r t o c o n s i d e r . Denton and Wisenbaker (1977) found t h a t n u r s e s w i t h a number o f y e a r s o f work e x p e r i e n c e had l o w e r d e a t h a n x i e t y t h a n s t u d e n t n u r s e s . McCarthy (1985) found t h a t ICU n u r s e s had s i g n i f i c a n t l y h i g h e r d e a t h a n x i e t y t h a n ward n u r s e s and t h a t t h e r e was a n e g a t i v e c o r r e l a t i o n between d e a t h 64 a n x i e t y and t h e number o f y e a r s o f n u r s i n g . W h i t t e n b e r g (1980) added t o t h i s r e l a t i o n s h i p by r e p o r t i n g t h a t n u r s e s w i t h f i v e o r more y e a r s o f e x p e r i e n c e had l o w e r d e a t h a n x i e t y t h a n t h o s e w i t h l e s s t h a n f i v e y e a r s . Kane and Hogan (1985) f o u n d t h a t younger and l e s s e x p e r i e n c e d p h y s i c i a n s had more d e a t h a n x i e t y t h a n t h o s e who were o l d e r and more e x p e r i e n c e d . The r e l a t i o n s h i p between d e a t h a n x i e t y and e x p e r i e n c i n g t h e l o s s o f s i g n i f i c a n t o t h e r s i s not v e r y c l e a r . There appears t o be c o n t r a d i c t o r y r e s u l t s as r e p o r t e d by L o n e t t o and Templer (198 6) i n t h e i r r e v i e w o f t h e l i t e r a t u r e . One s t u d y ( C o l e , 1978-1979) found t h a t t h o s e p e r s o n s who had l o s t a s i g n i f i c a n t o t h e r w i t h i n t h e p a s t y e a r had l o w e r d e a t h a n x i e t y ; w h i l e a n o t h e r (Gibbs & A c h t e r b e r g - L a w l i s , 1979) r e p o r t s t h a t l o w e r d e a t h a n x i e t y among t e r m i n a l c a n c e r p a t i e n t s t o be a s s o c i a t e d w i t h p r e v i o u s e x p e r i e n c e w i t h a d y i n g p e r s o n w i t h whom one had a c l o s e r e l a t i o n s h i p . A n o t h e r s t u d y ( L i t m a n , 1979) showed a r i s e i n d e a t h a n x i e t y t h r o u g h o u t t h e c o u r s e o f t h e y e a r f o l l o w i n g t h e l o s s o f an immediate f a m i l y member; w h i l e a n o t h e r (Smith, 1977) r e p o r t e d no r e l a t i o n s h i p between d e a t h a n x i e t y and l o s s o f a l o v e d one w i t h i n t h e p a s t y e a r . S t i l l a n o t h e r s t u d y (Ochs, 1979) r e p o r t s t h e d e a t h o f a c l o s e f r i e n d o r r e l a t i v e w i t h i n t h e l a s t two y e a r s had i n c r e a s e d d e a t h a n x i e t y . 65 4. FACTOR TWO: The O r g a n i z a t i o n a l C o n t e x t o f t h e H o s p i t a l System A major i s s u e o u t l i n e d by Hamric (1977) i n c a r i n g f o r t h e d y i n g p a t i e n t i s t h e o r g a n i z a t i o n o f t h e h o s p i t a l system i t s e l f . The d i f f i c u l t y i s t h a t h o s p i t a l s a r e not s e t up t o d e a l w i t h t h e d y i n g . More and more h o s p i t a l s have come t o be p l a c e s d e s i g n e d and o r g a n i z e d f o r t h e purpose o f c o n t r o l l i n g d e a t h . I t appears t h a t t h e o r g a n i z a t i o n a l c o n t e x t o f t h e h o s p i t a l i s d i a m e t r i c a l l y opposed t o t h e needs o f t h e d y i n g p a t i e n t ( H e a l t h and W e l f a r e Canada, 1982) . The major g o a l s o f our m e d i c a l i n s t i t u t i o n s i s t o t r e a t , c u r e , and r e h a b i l i t a t e . A d e a t h i s e x p e r i e n c e d as a f a i l u r e and p e r s o n a l a f f r o n t by t h e h e a l t h c a r e team. In s o c i o l o g i c a l t e r m s , t h e d y i n g p e r s o n i s a " d e v i a n t i n t h e m e d i c a l s u b c u l t u r e " , and s e r v e s as a c o n s t a n t r e m i n d e r o f m e d i c i n e ' s u l t i m a t e f a i l u r e ( R o l l i n , 1984, p . 9 9 ) . In terms o f R i v e r v i e w H o s p i t a l , t h e g o a l s a r e t h e same as s t a t e d above, however, t h e d e a t h o f a p a t i e n t w i l l p e r haps not be p e r c e i v e d as b e i n g such a p e r s o n a l and team f a i l u r e . Many o f t h e p a t i e n t s a t R i v e r v i e w H o s p i t a l i n t h e G e r i a t r i c D i v i s i o n a r e c h r o n i c c a r e as opposed t o a c u t e c a r e . I n s t i t u t i o n s t h a t p r i m a r i l y d e a l w i t h c h r o n i c c a r e c a s e s a r e perhaps l e s s d e a t h - d e n y i n g t h a n a c u t e c a r e i n s t i t u t i o n s . I n o r d e r t h a t o r g a n i z a t i o n a l o b j e c t i v e s can be met, t h e n a t u r e o f t h e a c t i v i t i e s and b e h a v i o u r s w i t h i n t h e h o s p i t a l need t o be p r e d i c t a b l e . The p r e s e n c e o f a d y i n g p e r s o n i n a c u r e - o r i e n t e d o r g a n i z a t i o n d i s r u p t s t h e smooth c a r r y i n g out o f t h e o b j e c t i v e s . "Dying p a t i e n t s demand t h a t r e g u l a t i o n s and r o u t i n e s be changed t o meet t h e i r need" ( C a s t l e s and Murray, 1979, p . 5 2 ) . The d y i n g p a t i e n t o f t e n r e q u i r e s f a r more c o m p l i c a t e d n u r s i n g c a r e t h a n t h e average p a t i e n t (Hamric, 1977) . The p s y c h o l o g i c a l demands o f t h e s e p a t i e n t s may be g r e a t e r t h a n t h e p h y s i c a l demands b u t o f t e n do not r e c e i v e as much a t t e n t i o n . The h o s p i t a l system rewards p e r s o n n e l f o r " g e t t i n g work done" and k e e p i n g t h e o r g a n i z a t i o n r u n n i n g s m oothly. Thus, p s y c h o l o g i c a l c a r e i s not c o n s i s t e n t l y r e f l e c t e d i n p r a c t i c e due t o t i m e p r e s s u r e s and h o s p i t a l m i l i e u (Hamric, 1977) . T h i s can a l s o sometimes be t r u e o f m e n t a l i n s t i t u t i o n . The p a t i e n t i s s o c i a l i z e d i n t h e o r g a n i z a t i o n a l c o n t e x t o f t h e h o s p i t a l i n s t i t u t i o n t o be a "good p a t i e n t " by not c o m p l a i n i n g , and by s u r r e n d e r i n g a l l c o n t r o l t o t h e h o s p i t a l and i t s s t a f f . "They a r e made t o f e e l v e r y s m a l l and l o s t i n t h e s e i n s t i t u t i o n s w i t h t h e ma s s i v e t e c h n o l o g y , s p e c i a l l anguage, u nique s t y l e o f communication, and complex h i e r a r c h y " ( R o l l i n , 1984, p. 9 8 ) . P a t i e n t s can be d e p e r s o n a l i z e d , t r e a t e d as c a s e s r a t h e r t h a n i n d i v i d u a l s , and d e p r i v e d o f honest communication about t h e i r c o n d i t i o n . D o c t o r s and n u r s e s can i n h i b i t i n t e r a c t i o n because o f t e n t i m e s t h e communication t h e y employ i s i n d i r e c t and u t i l i z e s j a r g o n . F u r t h e r , m e d i c a l s t a f f i n a sense " w r i t e o f f " t h e d y i n g 67 e l d e r l y , w i t h t a c i t s a n c t i o n o f s o c i e t y . N u r s e s have been t i m e d as r e s p o n d i n g c o n s i d e r a b l y more s l o w l y t o t h e c a l l s from e l d e r l y p a t i e n t s t h a n from younger, n o n - t e r m i n a l p a t i e n t s ( R o l l i n , 1984) . Sudnow (1967) even e x p l a i n s how t h e h a n d l i n g and d i s p o s i t i o n o f t h e dead body d e n i e s t h a t d e a t h has o c c u r r e d . He found i n h i s s t u d y t h a t b o d i e s a r e removed a t t i m e s when wards might be empty such as m e a l t i m e s ; t h e p r e p a r a t i o n o f t h e body might b e g i n even b e f o r e d e a t h has o c c u r r e d ; and o t h e r p a t i e n t s a r e not t o l d about t h e d e a t h . A major i s s u e f a c i n g t h e h o s p i c e movement i s r e s i s t a n c e on p a r t o f t h e p h y s i c i a n s ( C o r l e s s , 1983) . P h y s i c i a n r e s i s t a n c e may r e s u l t from a " w a i t and s e e " a t t i t u d e about i n n o v a t i o n . I n o t h e r s i t u a t i o n s , t h e r e may be t h e f e e l i n g t h a t h o l i s t i c c a r e i s b e i n g g i v e n a l r e a d y , and t h e r e f o r e why a l l t h e f u s s about p a l l i a t i v e c a r e ? P h y s i c i a n s w i s h i n g n o t t o "abandon" t h e i r p a t i e n t s o f t e n s u b j e c t them t o h e r o i c , e x p e n s i v e s u r g i c a l and m e d i c a l p r o c e d u r e s whose n e t r e s u l t i s i a t r o g e n i c s u f f e r i n g and m i s e r a b l e q u a l i t y o f l i f e . The p h y s i c i a n may do t h i s i n t h e b e l i e f t h a t i t may h e l p t h e p a t i e n t , and i f not t h a t p e r s o n , o t h e r s i n t h e f u t u r e . They a r e f a c e d w i t h t h e dilemma o f how t o p r a c t i c e m e d i c i n e w i t h a credo t h a t demands f a i t h f u l n e s s t o t h e p r e s e r v a t i o n o f human l i f e . The q u e s t i o n o f when t o recommend t h a t t r e a t m e n t be d i r e c t e d t o c u r e be s t o p p e d i s a v e r y d i f f i c u l t 68 one and demands t h e mind o f t h e s c i e n t i s t and t h e h e a r t o f t h e a r t i s t ( C o r l e s s , 1983, p.341). D o c t o r s who no l o n g e r 'hope' f o r c u r e a r e f r e q u e n t l y c o n c e r n e d t h a t t h e r e f e r r a l t o p a l l i a t i v e c a r e w i l l t a k e away t h e p a t i e n t s ' hope. The e n s u i n g d i s c r e p a n c y i n t h e p h y s i c i a n s ' b e h a v i o u r o f p r o m o t i n g c u r e w h i l e n o n - v e r b a l l y i n d i c a t i n g t h a t i t i s not l i k e l y c o nnotes h e l p l e s s n e s s and h o p e l e s s n e s s t o t h e p a t i e n t . E n t e r i n g i n t o p a l l i a t i v e c a r e a c t u a l l y r e s o l v e s t h i s f o r t h e p a t i e n t and f a m i l y ( C o r l e s s , 1983) . T h i s i d e a i s u n d e r e s t i m a t e d by some p h y s i c i a n s . Depending on how r e s i s t a n t a p h y s i c i a n i s t o p a l l i a t i v e c a r e , t h e t i m i n g o f t h e r e f e r r a l w i l l v a r y . I t has been o b s e r v e d t h a t l o n g e r i n v o l v e m e n t i n t h e p a l l i a t i v e c a r e system enhances t h e p r o b a b i l i t y o f a more p e a c e f u l d e a t h by p r o v i d i n g an o p p o r t u n i t y f o r t h e r e s o l u t i o n o f t h e problems o f l i v i n g and d y i n g ( C o r l e s s , 1983) . 5. FACTOR THREE: E x p e c t a t i o n s o f P r o f e s s i o n a l R o l e s The t h i r d major f a c t o r i s r o l e e x p e c t a t i o n s p l a c e d upon t h e h e a l t h c a r e p r o f e s s i o n a l s . W i t h i n a team, members m a i n t a i n a v a r i e t y o f r o l e s i n o r d e r t o a c c o m p l i s h i t s t a s k s o r g o a l s . These r o l e s a r e , i n t u r n , i n f l u e n c e d by i n t e r n a l and e x t e r n a l r o l e e x p e c t a t i o n s . I n t e r n a l r o l e e x p e c t a t i o n s i n v o l v e a p e r s o n ' s p r o f e s s i o n a l i d e n t i t y , w h i c h " i s t h e c o n c e p t u a l i z e d image a' p e r s o n has o f [him o r h e r s e l f ] as a p r o f e s s i o n a l , t h e knowledge and s k i l l s a c q u i r e d from advanced 69 p r o f e s s i o n a l e d u c a t i o n , and t h e u n d e r s t a n d i n g o f how t h e s e s s k i l l s can b e s t be a p p l i e d " (Lowe & H erranen, 1978, p.325). Thus, t h e i n t e r n a l e x p e c t a t i o n s t h a t each i n d i v i d u a l has w i l l i n f l u e n c e how she o r he and o t h e r s on t h e team s h o u l d behave and r e s p o n d t o a c h i e v e t h e c o l l e c t i v e g o a l s . R o l e and f u n c t i o n a r e a l s o i n f l u e n c e d by t h e e x p e c t a t i o n s we p e r c e i v e o t h e r s have o f us, such as from t h e members o f t h e v a r i o u s groups t h a t we b e l o n g t o . F o r example, we a r e i n f l u e n c e d by t h e r o l e e x p e c t a t i o n s o f our p r o f e s s i o n a l group, t h e o r g a n i z a t i o n a l group, team sub-groups, and f a m i l i a l a s s o c i a t i o n s . Awareness o f t h e s e e x p e c t a t i o n s p l a c e d on us from o u t s i d e o u r s e l v e s w i l l i n f l u e n c e our b e h a v i o u r i n t h e group. W i t h i n a h o s p i t a l system e x t e r n a l r o l e e x p e c t a t i o n s a r e a major i n f l u e n c e . " H o s p i t a l s a r e among t h e most complex o r g a n i z a t i o n s i n modern s o c i e t y , c h a r a c t e r i z e d by e x t r e m e l y f i n e d i v i s i o n s o f l a b o u r and an e x q u i s i t e r e p e r t o r y o f t e c h n i c a l s k i l l s " ( C a s t l e s and Murray, 1979, p . 5 2 ) . T h e r e f o r e , s t r i c t r o l e d i v i s i o n and r o l e e x p e c t a t i o n s a r e n e c e s s a r y t o keep t h e o r g a n i z a t i o n r u n n i n g s m o o t h l y and e f f i c i e n t l y . A common consequence i s t h a t h e a l t h c a r e p r o f e s s i o n a l s d e v e l o p r i g i d p e r c e p t i o n s o f each o t h e r ' s r o l e s . I t has been shown t h a t i n f a c t , t h e r e i s l i t t l e congruence between t h e way a p r o f e s s i o n d e f i n e s i t s own r o l e s and t h e way o t h e r s d e f i n e them (Lowe & Herranen, 1978) . Lowe and Herranen (1978) suggest t h a t t h i s i s e s p e c i a l l y t r u e when p r o f e s s i o n a l s who c o n s i d e r t h e m s e l v e s t o be o f h i g h e r s t a t u s , i e . p h y s i c i a n s , a r e d e l i n e a t i n g t h e r o l e o f a l o w e r s t a t u s p r o f e s s i o n , i e . s o c i a l w o r k e r s . B o t h i n t e r n a l and e x t e r n a l r o l e e x p e c t a t i o n s can l e a d t o r o l e a m b i g u i t y where e x p e c t a t i o n s a r e not c l e a r l y d e f i n e d o r communicated. A l l h e a l t h c a r e p r o f e s s i o n a l s a r e p r o d u c t s o f r o l e - o r i e n t e d t r a i n i n g , w h i c h i s n e c e s s a r y f o r t h e development o f t h e p r o f e s s i o n a l s e l f . U n f o r t u n a t e l y , t h i s may l e a d t o t h e development o f c i r c u m s c r i b e d and s t e r e o t y p e d a t t i t u d e s about o t h e r p r o f e s s i o n a l r o l e s , and t o b e h a v i o u r t h a t can l e a d t o " s t a k i n g out o f one's t e r r i t o r y " (Hamric, 1977). S t e r e o t y p e d a t t i t u d e s about r o l e d e f i n i t i o n can p r e s e n t r e a l p roblems f o r t h o s e a t t e m p t i n g t o g i v e c a r e t o p a t i e n t s . F o r example, p e r c e p t i o n s o f n u r s e s ' r o l e as ward manager, p h y s i c i a n ' s s e r v a n t , and t e c h n i c i a n c o n f l i c t w i t h t h e i n t e r n a l e x p e c t a t i o n t h a t t h e y a l s o p r o v i d e p s y c h o s o c i a l c a r e . I n o t h e r words, t h e s t e r e o t y p e h e l d by o t h e r s o f what n u r s e s do does not i n c l u d e p s y c h o s o c i a l c a r e , w h i c h t h e n u r s e s t h e m s e l v e s c o n s i d e r t o be an i m p o r t a n t p a r t o f t h e i r r o l e . S o c i a l w o r k ers a r e not exempt from t h e dilemma c r e a t e d by r o l e c o n f l i c t . E x t e r n a l l y , s o c i a l w o r k ers r o l e may be r e g a r d e d as a r r a n g e r s o f s e r v i c e s and r e s o u r c e s w i t h no r e s p o n s i b i l i t y f o r i n p u t i n t o p a t i e n t c a r e . These e x t e r n a l e x p e c t a t i o n s a r e i n c o m p a t i b l e w i t h our i n t e r n a l e x p e c t a t i o n s , w h i c h s u g g e s t t h a t we a l s o have r o l e s i n p r o v i d i n g c o u n s e l l i n g , e d u c a t i o n , c o n s u l t a t i o n , advocacy, e t c . , r e s u l t i n g i n r o l e c o n f l i c t . C o n f l i c t w i t h our i n t e r n a l e x p e c t a t i o n s may a l s o e x i s t i n w o r k i n g w i t h t h e t e r m i n a l l y i l l . S o c i a l workers may be t h e most o p t i m i s t i c and f u t u r e -o r i e n t e d o f t h e human s e r v i c e p r o f e s s i o n s ( G i n s b e r g , 1988). S o c i a l w o r k e r s seem t o b e l i e v e t h a t improvement i s p o s s i b l e no m a t t e r how p e r v a s i v e a p r o b l e m might be. A l s o , t h e n o t i o n t h a t c e r t a i n problems have always e x i s t e d and w i l l c o n t i n u e t o e x i s t i s not a c c e p t a b l e . F o r s o c i a l w o r k e r s a l l s o c i a l p roblems a r e , by d e f i n i t i o n , phenomena t o be b a t t l e d and r e d u c e d . Death, as a s o c i a l problem, i s f i n a l , non-p r e v e n t a b l e , u n i v e r s a l and i r r e v e r s i b l e . Death does not f i t t h e models f o r t r e a t i n g s o c i a l problems most w i d e l y a c c e p t e d i n s o c i a l work t h e o r y and p r a c t i c e t o d a y ( G i n s b e r g , 1977) . Death c r e a t e s a p r o f e s s i o n a l dilemma, t h u s we may a v o i d i t o r m i n i m i z e i t . There i s a l s o t h e i s s u e o f " p r o f e s s i o n a l b e h a v i o u r " , w h i c h i s a s s o c i a t e d w i t h l a c k o f e x p r e s s i o n o r emotion. S o c i a l w o r k ers a r e as apt as anyone e l s e t o be i n f l u e n c e d by c u l t u r e - b o u n d a t t i t u d e s t o w a r d e x p r e s s i o n o f g r i e f and e x p r e s s i n g g r i e f t h e m s e l v e s . S o c i a l w o r k e r s who a r e i n f r e q u e n t c o n t a c t w i t h d y i n g i n d i v i d u a l s and t h e i r f a m i l i e s need t o r e c o g n i z e t h e s t r e n g t h o f t h e t a b o o and t h e i r own f e e l i n g s about g r i e f . The danger i s t h a t w i t h o u t a c c o m p l i s h i n g t h i s t a s k , s o c i a l w orkers t r y i n g t o o f f e r c o m f o r t t o d y i n g p a t i e n t s and t h e i r f a m i l i e s may be, i n t r u t h , a g e nts o f a c o n s p i r a c y t o c o n t a i n g r i e f . As s o c i a l w o r k e r s we must c r e a t e an atmosphere i n wh i c h p e r m i s s i o n t o f e e l , c r y , rage and g r i e v e can be conveyed and a c t e d upon. The t a s k i s d i f f i c u l t a t b e s t , and i m p o s s i b l e f o r a s o c i a l w orker who i s u n c o m f o r t a b l e about s h a r i n g g r i e f e x p e r i e n c e s , o r f e a r f u l o f p e r s o n a l f e e l i n g s about g r i e f and d e a t h . A s o c i a l worker cannot e f f e c t i v e l y ask o t h e r s t o r i s k v i o l a t i o n o f t h e taboo i f he o r she has not a l r e a d y t a k e n t h e r i s k and come t o terms w i t h i t . F e a r about e x p r e s s i n g g r i e f may h o l d s o c i a l w o r k e r s , and o t h e r p r o f e s s i o n a l s f o r t h a t m a t t e r , t o an i n e f f e c t i v e , s u p e r f i c i a l l e v e l o f p r a c t i c e . 6. FACTOR FOUR: Teamwork A f o u r t h i s s u e t o c o n s i d e r i n g i v i n g c o o r d i n a t e d t h e r a p e u t i c c a r e t o t h e d y i n g p a t i e n t i s teamwork amongst h e a l t h p r o f e s s i o n a l s . Because o f t h e i n c r e a s i n g c o m p l e x i t i e s i n t h e h e a l t h c a r e system, i n g e n e r a l , and p a r t i c u l a r l y i n m e d i c a l i n s t i t u t i o n s , teamwork has become t h e method f o r t h e d e l i v e r y o f h e a l t h c a r e . I n c r e a s e d s p e c i a l i z a t i o n has e n s u r e d t h a t no one i n d i v i d u a l can p o s s e s s a l l o f t h e n e c e s s a r y e x p e r t i s e f o r t h e c a r e o f p a t i e n t s and f a m i l i e s (Lowe & Herranen, 1981) . Teamwork can t h u s p r o v i d e an o r g a n i z i n g and u n i f y i n g framework f o r t h e work o f h e a l t h c a r e p r o f e s s i o n a l s . A team i s d e f i n e d as: "a f u n c t i o n i n g u n i t composed o f i n d i v i d u a l s w i t h v a r i e d and s p e c i a l i z e d t r a i n i n g who c o o r d i n a t e t h e i r a c t i v i t i e s t o p r o v i d e s e r v i c e s t o a c l i e n t o r a group o f c l i e n t s " (Lowe & Herranen, 1981, p . l ) . There a r e b a s i c a l l y two models o f teamwork - an i n t e r d i s c i p l i n a r y ( i n t e g r a t i v e ) approach, and a m u l t i d i s c i p l i n a r y ( c o o r d i n a t e ) a p proach. A m u l t i d i s c i p l i n a r y model can b e s t be a p p l i e d when a d d r e s s i n g s h o r t - t e r m c a r e w i t h s p e c i f i c a c u t e h e a l t h p r o b l e m s . There i s a h i e r a r c h i a l s t r u c t u r e w i t h t h i s model, u s u a l l y w i t h a p h y s i c i a n a t t h e t o p d i r e c t i n g team f u n c t i o n i n g . There i s l e s s emphasis on i n v o l v i n g t h e p a t i e n t i n t h e d e c i s i o n - m a k i n g p r o c e s s . M u l t i d i s c i p l i n a r y teams a r e v e r y t a s k o r i e n t e d . However, t h e i n t e g r a t i v e model i s f u n c t i o n a l f o r on g o i n g teams who c a r e f o r p a t i e n t s w i t h c h r o n i c problems (Lowe & Herranen, 1981), such as i n p a l l i a t i v e c a r e . The i n t e g r a t i v e a pproach i s l e s s o f a t e r r i t o r i a l model o f c a r e . W i t h an i n t e r d i s c i p l i n a r y team, members can t a k e on t h e l e a d e r s h i p r o l e when t h e i r own p a r t i c u l a r s k i l l s a r e e s p e c i a l l y needed t o s o l v e a problem. A l l members o f t h e team have e q u a l s t a t u s , i n c l u d i n g t h e p a t i e n t and f a m i l y . There i s more o f an emphasis on t h e mutual s u p p o r t f u n c t i o n i n an i n t e r d i s c i p l i n a r y team. Teamwork i s a p o p u l a r concept and i t s advantages a r e u n i v e r s a l l y r e c o g n i z e d . However, as Lowe and Herranen (1981) s u g g e s t , c o n s i d e r a b l e ' c o n f u s i o n s u r r o u n d s t h e concept o f teamwork, and t h u s t h e term has been used r a t h e r l o o s e l y . 74 Teamwork can be d e f i n e d i n any number o f ways and can evoke a v a r i e t y o f r e s p o n s e s . F o r example, t o some, teamwork means c o l l a b o r a t i o n , w h i l e f o r o t h e r s , i t c o u l d mean any group a c t i o n . As h e a l t h c a r e p r o f e s s i o n a l s a t t empt t o p r a c t i c e a c o n c e p t t h e y a r e u nsure about, e x p e c t a t i o n s a r e r a i s e d and f r u s t r a t i o n s a r e h e i g h t e n e d (Lowe & H e r r a n e n , 1981) . P r o f e s s i o n a l s from v a r i o u s d i s c i p l i n e s have g e n e r a l l y not been t r a i n e d i n w o r k i n g t o g e t h e r as a c o o r d i n a t e d group. Hamric (1977) a s s e r t s t h a t teamwork i n r e a l i t y i s i n f r e q u e n t l y b e i n g p r a c t i s e d i n t h e modern h o s p i t a l . Lowe and Herranen (1978) s u g g e s t t h a t t h e r e a r e s i x c h a r a c t e r i s t i c s t h a t i n f l u e n c e team f u n c t i o n i n g : (a) g o a l s o r t a s k s o f t h e team; (b) r o l e e x p e c t a t i o n s ; (c) communication p a t t e r n s ; (d) d e c i s i o n - m a k i n g p r o c e s s ; (e) l e a d e r s h i p ; and (f) norms. The p u rpose o f t h e team d e f i n e s t h e g o a l s o r t a s k s t h e team w i s h e s t o a c c o m p l i s h . In t h e group p r o c e s s r e g a r d i n g g o a l s , i m p o r t a n t q u e s t i o n s must be r a i s e d such as how g o a l s a r e d e f i n e d , who s e t s them, and how much commitment t o them i s t h e r e . The r e s o l u t i o n o f t h e s e q u e s t i o n s can have t h e p o t e n t i a l o f b r e a k i n g down t h e s t r u c t u r e o f t h e team i f t h e r e i s d i s a g r e e m e n t , o r can l e a d t o a s t r e n g t h e n e d s t r u c t u r e . In r e a l i t y , however, o r g a n i z a t i o n a l c o n s t r a i n t s , s e r v i c e mandates, and s t a f f i n g p a t t e r n s d e t e r m i n e how teams a r e c o n s t r u c t e d and u t i l i z e d . The m u l t i p l i c i t y o f h e a l t h c a r e 75 p r o v i d e r s and m u l t i p l e c o n s u l t i n g s e r v i c e s f u r t h e r c o m p l i c a t e t h e p r o b l e m . C o n s i d e r a b l e s t r e s s i s c r e a t e d by t h e o r g a n i z a t i o n a l r e a l i t y o f heavy w o r k l o a d s , s h o r t a g e s o f s t a f f , and h i g h t u r n o v e r r a t e s . The s t r e s s i s bound t o a f f e c t t h e q u a l i t y o f c a r e g i v e n t o some degree. As we d i s c u s s e d i n t h e p r e v i o u s s e c t i o n , r o l e e x p e c t a t i o n s p l a y a v i t a l r o l e i n group f u n c t i o n i n g . "Both i n t e r n a l and e x t e r n a l r o l e e x p e c t a t i o n s can l e a d t o r o l e a m b i g u i t y ( e x p e c t a t i o n s not c l e a r l y d e f i n e d and communicated) , r o l e c o n f l i c t ( i n c o m p a t i b l e and c o n f l i c t u a l e x p e c t a t i o n s ) , and r o l e o v e r l o a d ( i n a b i l i t y t o meet m u l t i p l e e x p e c t a t i o n s ) " (Lowe & Herranen, 1978, p.325). I n o r d e r t o f u n c t i o n w i t h i n a team, i t i s n e c e s s a r y f o r each member t o m a i n t a i n an e q u i l i b r i u m between i n t e r n a l v a l u e s and i d e a s and t h e e x t e r n a l e x p e c t a t i o n s (Lowe & Herranen, 1978), t h u s r e d u c i n g t h e above n e g a t i v e consequences. Of c o u r s e , t h i s e q u i l i b r i u m i s e a s i e r t o m a i n t a i n when one i s a member o f a w e l l - f u n c t i o n i n g d e v e l o p e d team f o r over a l o n g p e r i o d o f t i m e . I n r e a l i t y , however, t h i s s i t u a t i o n i s somewhat d i f f i c u l t t o a c h i e v e . I n a l a r g e o r g a n i z a t i o n t h e p o s s i b i l i t i e s o f t r a n s f e r s and t u r n o v e r s a r e r e a l , w hich d i s r u p t team f u n c t i o n i n g and development. The more un d e v e l o p e d and l o o s e l y a s s o c i a t e d a team i s , t h e h i g h e r t h e p r o b a b i l i t y o f d i s e q u i l i b r i u m i n r o l e e x p e c t a t i o n s and s t r i c t r o l e d e l i n e a t i o n (Lowe & Herranen, 1978) . U n f o r t u n a t e l y , when t h e r e i s a l a c k o f e x p l i c i t u n d e r s t a n d i n g o f o t h e r team member's r o l e s and f u n c t i o n s , a sense o f t e r r i t o r i a l i t y , r e s i s t a n c e t o s h a r i n g i n f o r m a t i o n , s t r a i n e d w o r k i n g r e l a t i o n s h i p s , and u n n e c e s s a r y d u p l i c a t i o n o f work can d e v e l o p . F r a g m e n t a t i o n o f t h e team w i l l a l s o l e a d t o poor communication. Independent and p a r a l l e l f u n c t i o n i n g can r e s u l t from f e a r o f l o s s o f s t a t u s and p l a c e on t h e team. The o b v i o u s outcome i s c o n f u s i o n not o n l y f o r t h e s t a f f b u t f o r t h e p a t i e n t s as w e l l . P a t i e n t s may w e l l r e a c t t o team d y s f u n c t i o n by m a n i f e s t i n g f e e l i n g s o f h e l p l e s s n e s s , which i n c r e a s e s t h e i r dependency on s t a f f (Lowe & He r r a n e n , 1978). I f s t a f f members a r e not communicating w i t h each o t h e r , t h e y may g i v e p a t i e n t s c o n f l i c t i n g messages, t h u s i n c r e a s i n g p a t i e n t s ' a n x i e t y . " F u r t h e r , t h e p a t i e n t s ' l a c k o f c o n f i d e n c e i n t h e team's a b i l i t y t o p r o v i d e them w i t h c a r e may m a n i f e s t i t s e l f i n i n c r e a s i n g symptomatology" (Lowe & Herranen, 1978, p.329). I t i s e s p e c i a l l y i m p o r t a n t i n p a l l i a t i v e c a r e t h a t t h e team f u n c t i o n as a u n i t w i t h c l e a r , communicated messages. These messages a r e based upon t h e i n t e r n a l and e x t e r n a l r o l e e x p e c t a t i o n s o f h e a l t h c a r e p r o f e s s i o n a l s . These e x p e c t a t i o n s must be b a l a n c e d t o promote good team f u n c t i o n i n g . The way a team a r r i v e s a t i t s d e c i s i o n s w i l l a l s o i n f l u e n c e f u n c t i o n i n g . A d e c i s i o n can be r e a c h e d by d e f a u l t , m a j o r i t y v o t e , u n i l a t e r a l l y , consensus, o r u n a n i m i t y (Lowe & Herranen, 1978). How i n v o l v e d i n t h e d e c i s i o n - m a k i n g p r o c e s s , and how open someone can f e e l i n e x p r e s s i n g t h e i r o p i n i o n w i l l 77 impact team f u n c t i o n i n g . Depending on t h e p h i l o s o p h y o f t h e team, t h e l e a d e r s h i p w i l l d i f f e r . F o r i n s t a n c e , i f t h e r e i s an emphasis on p a t h o l o g y and d i s e a s e r a t h e r t h a n an h u m a n i s t i c h o l i s t i c emphasis, t h e l e a d e r s h i p w i l l be h e a v i l y w e i g h t e d on t h e m e d i c a l p e r s o n n e l r a t h e r t h a n b e i n g a s h a r e d v e n t u r e . R e l i a n c e on t h e m e d i c a l model and i t s i n h e r e n t h i e r a r c h i a l s t r u c t u r e has t r a d i t i o n a l l y p l a c e d t h e p h y s i c i a n a t t h e head of t h e team. T h e r e f o r e , as Hamric (1977) s u g g e s t s "the o r i e n t a t i o n o f t h e i n d i v i d u a l p h y s i c i a n has a g r e a t d e a l t o do whether a team approach i s r e a l i z e d " (p.194). However, an i n t e g r a t i v e approach argues t h a t s h a r e d l e a d e r s h i p i s p r e f e r a b l e . The f i n a l c h a r a c t e r i s t i c o f team f u n c t i o n i n g p r e s e n t e d by Lowe & Herranen (1978) i s i t s norms. Norms a r e t h e u n w r i t t e n r u l e s t h a t p e o p l e f o l l o w t o g u i d e t h e i r b e h a v i o u r and a r e d e v e l o p e d by t h e team t o ens u r e t h a t t h e r e a r e b o u n d a r i e s between what i s a c c e p t a b l e and what i s n o t . Norms t h e n a l s o g o v e r n communication p a t t e r n s , l e a d e r s h i p , d e c i s i o n making, c o n f l i c t r e s o l u t i o n , e t c . Norms can c o u n t e r a c t team development by b e i n g t o o r e s t r i c t i v e and narrow, and c o n v e r s e l y , by b e i n g t o o g e n e r a l and vague. A team, l i k e any o t h e r group, goes t h r o u g h an e v o l u t i o n a r y p r o c e s s w i t h i d e n t i f i a b l e d e v e l o p m e n t a l s t a g e s . "The Lowe-Herranen model t r a c e s t h e development o f a group o f 78 p e o p l e w o r k i n g t o g e t h e r from t h e p e r i o d o f f o r m a t i o n , t h r o u g h c o n f l i c t and c r i s e s , t o r e s o l u t i o n , t o team m a i n t e n a n c e " (Lowe & Herranen, 1981, p . 2 ) . The f i r s t s t a g e i s "Becoming A c q u a i n t e d " . D u r i n g t h i s s t a g e t h e s t r u c t u r e o f t h e group t e n d s t o be h i e r a r c h i a l w i t h t h e h i g h e r s t a t u s p r o f e s s i o n a l s assuming t h e p o s i t i o n o f l e a d e r . The p a t t e r n s o f i n t e r a c t i o n t e n d t o be p o l i t e and s u p e r f i c i a l , w i t h l i t t l e emotion emerging. I t i s d u r i n g t h i s s t a g e t h a t each member s t r u g g l e s t o f i n d h i s / h e r p l a c e on t h e team, t h u s c o n f l i c t i s kept t o a minimum. Group p r o d u c t i v i t y i s low w h i l e i n d i v i d u a l p r o d u c t i v i t y i s h i g h e r . Stage two, i d e n t i f i e d as " T r i a l and E r r o r " , e v o l v e s when t h e r e i s an awareness o f t h e need t o work t o g e t h e r towards a common g o a l f o r p a t i e n t c a r e . D u r i n g t h i s s t a g e , t h e members b e g i n t o t e s t t h e b o u n d a r i e s o f t h e group, form a l l i a n c e s and d i s t a n c e t h e members p e r c e i v e d t o be i n c o m p a t i b l e . Each member may e x h i b i t t h e s e b e h a v i o u r s i n o r d e r t o demo n s t r a t e t o t h e r e s t o f t h e group t h a t h i s / h e r c o n t r i b u t i o n i s u n i q u e . T u r f i s m and m i n i m a l communication o r c o l l a b o r a t i o n a r e p r o m i n e n t . Group p r o d u c t i v i t y i s s t i l l low w h i l e i n d i v i d u a l p r o f e s s i o n a l s c o n t i n u e t o a c h i e v e s t a t e d g o a l s . The t h i r d s t a g e , " C o l l e c t i v e I n d e c i s i o n " , o c c u r s as t h e team t r i e s t o a v o i d d i r e c t c o n f l i c t and m a i n t a i n i t s e q u i l i b r i u m . B o u n d a r i e s f o r t h e group a r e b e g i n n i n g t o d e v e l o p , a l t h o u g h t h e r e i s no norm o f a c c o u n t a b i l i t y i n 79 operation and so l i t t l e i s accomplished. There does e x i s t the norm of pressure for i n d i v i d u a l s to conform, and t h i s leads to pseudo-consensus and scapegoating. "This i s a period of l i t t l e or weak leadership and leads to enormous discontent and helplessness on the part of a l l team members" (Lowe & Herranen, 1 9 7 8 , p.3 2 8 ) . The authors also suggest that both team and i n d i v i d u a l productivity are low as there e x i s t s the f e e l i n g that no one i s l i s t e n i n g to the other or being heard. When an i n t e r n a l or external c r i s i s occurs and forces the team to face the issue of " c o l l e c t i v e - i n d e c i s i o n " , the fourth stage i s reached. Thus, i n the " C r i s i s " stage, norms are established with more r i g i d i t y , roles and r e s p o n s i b i l i t i e s are further delineated. The team also begins to look more deeply into i t s own i n t e r n a l processes, thus team p r o d u c t i v i t y i s low. This stage i s characterized by open expression of emotion and recognition of c o n f l i c t . Stage f i v e , "Resolution", i s the f i r s t l e v e l of tangible teamwork. The group has emerged from the c r i s i s and has made a commitment to working together as a team. There ex i s t s open communication, shared leadership, decision-making and r e s p o n s i b i l i t y . However, t h i s i s s t i l l a f r a g i l e stage where much evaluation i s needed so that they can work towards the f i n a l stage of team maintenance. In t h i s stage there i s high i n d i v i d u a l and group productivity. In the f i n a l stage of "Team Maintenance", there i s a 80 s h a r e d acknowledgement o f team t a s k s w i t h g o a l s b e i n g b o t h c l i e n t - and t a s k - c e n t r e d and t h e f o c u s b e i n g on t h e achievement o f t h e s t a t e d g o a l s r a t h e r t h a n on who does what. There i s open communication, r e s o l u t i o n o f c o n f l i c t s , compromise, and n e g o t i a t i o n as each member r e c o g n i z e s t h e s k i l l s and c o n t r i b u t i o n o f t h e o t h e r d i s c i p l i n e s on t h e i r team. L e a d e r s h i p s h i f t s t o t h e p e r s o n b e s t q u a l i f i e d f o r c a r r y i n g out t h e c l i e n t ' s c a r e p l a n . D e c i s i o n s a r e s u p p o r t e d , a c c o u n t a b i l i t y t o t h e group e x i s t s , and t h e r e i s a w i l l i n g n e s s t o s h a r e i n f o r m a t i o n . The i d e a l model o f p a l l i a t i v e c a r e i s t o use an i n t e r d i s c i p l i n a r y ( i n t e g r a t i v e ) approach as o u t l i n e d above. I t i s i m p o r t a n t i n p a l l i a t i v e c a r e , as i n a l l h e a l t h c a r e , t h a t t h e p a t i e n t n o t be made t o f e e l o b j e c t i f i e d , d e p e r s o n a l i z e d , o r i s o l a t e d from t h e d e c i s i o n - m a k i n g p r o c e s s . An i n t e r d i s c i p l i n a r y approach r e a l l y works t o p r e v e n t t h e s e s i t u a t i o n s from happening as t h e p a t i e n t and f a m i l y a r e an e q u a l p a r t o f t h e team and not s e p a r a t e from i t . As we have d i s c u s s e d i n S e c t i o n F o u r , t h e h o s p i t a l i s a h i g h l y b u r e a u c r a t i z e d system w i t h emphasis on d i v i s i o n o f l a b o u r , and on h i e r a r c h i a l p a t t e r n s o f communication, d e c i s i o n - m a k i n g , l e a d e r s h i p and rewards (Lowe & Herranen, 1981). I n c o n t r a s t , teams a r e s t r u c t u r e d so as t o emphasize t h e s h a r i n g o f knowledge and communication a c r o s s d i s c i p l i n e s . I n o r d e r t o work, teamwork must be s a n c t i o n e d and s u p p o r t e d by 81 t h e environment i n w h i c h i t i s t r y i n g t o o p e r a t e (Lowe & Herranen, 1981). T h e r e f o r e , i f t h e i n s t i t u t i o n a l o r g a n i z a t i o n espouses t h e concept o f teamwork, i t must s u p p o r t t h a t c oncept w i t h commitment. T h i s can be a c c o m p l i s h e d by s h i f t i n g t h e rewards from h i e r a r c h i a l components t o e x p l i c i t r e c o g n i t i o n o f t h e team d e l i v e r y model (Lowe & Herranen, 1981). "Impediments t o p a t i e n t c a r e w i l l r e s u l t f o r t h o s e who a t t e m p t t o engage i n teamwork s a n c t i o n e d o n l y on paper and not i n p r a c t i c e " (Lowe & Herranen, 1981, p . 6 ) . The t a s k f o r t h e h o s p i t a l system i s t o d e a l w i t h t h e c o n f l i c t between t h e b u r e a u c r a c y and t h e team by d e v e l o p i n g an a l t e r n a t i v e o r g a n i z a t i o n a l p a t t e r n . 7. FACTOR FIVE: E d u c a t i o n and T r a i n i n g i n C a r i n g f o r t h e D y i n g A f i f t h f a c t o r i s amount and q u a l i t y o f d e a t h e d u c a t i o n and t r a i n i n g i n c a r i n g f o r d y i n g p e r s o n s and t h e i r f a m i l i e s . The d i s c o n t i n u i t y between e d u c a t i o n and s e r v i c e i s c o n s i s t e n t l y r e p o r t e d i n t h e l i t e r a t u r e . The u n c e r t a i n t y and c o n f u s i o n i n t h e minds o f h e a l t h c a r e p r o f e s s i o n a l s r e g a r d i n g t h e i r r o l e i n t e r m i n a l c a r e and c a r e o f t h e b e r e a v e d can, a t l e a s t i n p a r t , be d i r e c t l y a t t r i b u t e d t o t h i s p r oblem. C o r l e s s (1983) s u g g e s t s t h a t t h e problems o f r e s i s t a n c e t o p a l l i a t i v e c a r e and e d u c a t i o n a r e not one and t h e same but t h e r e i s i n d e e d some o v e r l a p . As e a r l y as 1968 G l a s e r and S t r a u s s recommended t h a t 82 " t r a i n i n g f o r t e r m i n a l c a r e s h o u l d be g r e a t l y a m p l i f i e d and deepened i n s c h o o l s o f m e d i c i n e and n u r s i n g " (1968, p.253). They n o t i c e d a t t h a t t i m e t h a t t h e emphasis was on l e a r n i n g n e c e s s a r y t e c h n i q u e s . The f a c t o f d y i n g and i t s p s y c h o l o g i c a l , s o c i a l and o r g a n i z a t i o n a l a s p e c t s were e i t h e r s e c o n d a r y o r absent i n t h e e d u c a t i o n o f h e a l t h p r o f e s s i o n a l s . The consequence o f t h i s r e s t r i c t e d c u r r i c u l u m i n e d u c a t i o n i s t h a t t h e b e h a v i o u r o f t h e p r o f e s s i o n a l t owards t h e d y i n g p a t i e n t was no d i f f e r e n t t h a n t h e average layman's, e x c e p t t h a t t h e p r o f e s s i o n a l s ' t e c h n i c a l knowledge o f d e a t h and d y i n g l e g i t i m i z e s t h e i r r o l e w i t h d y i n g p e o p l e . Thus, G l a s e r and S t r a u s s (1968) recommended t h a t c u r r i c u l u m be changed, not s i m p l y humanized, but d r a s t i c a l l y changed t o a d d r e s s and a t t a c k t h e d e e p - s e a t e d p r o f e s s i o n a l v a l u e s w i t h w h i c h t h e y were o p e r a t i n g . W i t h t h e g r o w i n g a t t e n t i o n on i s s u e s o f d e a t h and d y i n g o v e r t h e l a s t two decades, academic i n s t i t u t i o n s and p r o f e s s i o n a l s c h o o l s have begun t o i n c l u d e c o u r s e s and l e c t u r e s on t h e t o p i c . However, l i t t l e i s known about how t o o r g a n i z e and p r e s e n t such m a t e r i a l , t h e r e f o r e , perhaps t h e s e o p p o r t u n i t i e s have not been u t i l i z e d t o t h e i r f u l l p o t e n t i a l . Hamric (1977) n o t e s t h a t " w h i l e t h e b a s i c t h e o r e t i c a l n o t i o n s about d y i n g and d e a t h a r e p r o b a b l y d e a l t w i t h i n most u n d e r g r a d u a t e s c h o o l s o f n u r s i n g , t h e r e u n d o u b t e d l y remains a w i d e r v a r i a b i l i t y i n t h e amount and q u a l i t y o f d i r e c t c l i n i c a l 83 e x p e r i e n c e s t u d e n t s r e c e i v e " (1977, p.191). I n o t h e r words, she s u g g e s t s t h a t s t u d e n t s may r e c e i v e l e c t u r e s on d y i n g and d e a t h , b u t t h o s e t h r u s t i n t o t h e c r u c i a l r o l e o f c a r i n g f o r t h e d y i n g have had l i t t l e p r e p a r a t i o n i n s h a r p e n i n g i n t e r p e r s o n a l s k i l l s i n t h e t e r m i n a l c a r e s i t u a t i o n t h r o u g h s t r u c t u r e d , s u p p o r t e d , a c t u a l e x p e r i e n c e s w i t h d y i n g p a t i e n t s . Wagner (1972) r e p o r t s t h a t o n l y t o k e n a t t e m p t s have been made t o p r e p a r e t h e n u r s i n g s t u d e n t t o d e a l e f f e c t i v e l y w i t h t h e p h y s i c a l a s p e c t s o f t e r m i n a l c a r e o r t h e f e e l i n g s o f p a t i e n t s , f a m i l i e s , and n u r s e s . D i c k i n s o n (1981, 1985) shows t h a t o n l y 14 A m e r i c a n m e d i c a l s c h o o l s o f f e r e d f u l l - t e r m c o u r s e s i n d e a t h e d u c a t i o n ( i n Gerber, 1988) . However, a f u l l 82% o f American m e d i c a l s c h o o l s i n t e g r a t e s h o r t c o u r s e s and l e c t u r e s i n t o t h e c u r r i c u l u m . Gerber d e c l a r e s t h a t " [ p h y s i c i a n s ] have r e c e i v e d a d e a t h e d u c a t i o n o f s o r t s , 'on t h e s t r e e t c o r n e r ' , and o f t e n f i n d t h a t f e e l i n g s o f i n c a p a c i t y and u n p r e p a r e d n e s s l e a v e them f u l l o f anger, e m p t i n e s s , and a sense o f f a i l u r e " (1988, p.10) . A s t u d y d e v o t e d t o e x a m i n i n g t h e r e l e v a n c e o f p a l l i a t i v e c a r e t o t h e Canadian h e a l t h c a r e system by H e a l t h and W e l f a r e Canada (1982) e x p l o r e d p o s s i b l e ways t o improve t h e p r e s e n t s i t u a t i o n . One p r o b l e m i d e n t i f i e d c e n t r e s upon e d u c a t i o n and t r a i n i n g i n p a l l i a t i v e c a r e . F a c u l t i e s o f m e d i c i n e and s c h o o l s o f n u r s i n g w e r e ' c o n t a c t e d i n a l l p r o v i n c e s , and i t was found t h a t o n l y two s c h o o l s o f n u r s i n g were g i v i n g an e l e c t i v e 84 c o u r s e on t h e t o p i c . However, i n a l l i n s t i t u t i o n s t h e s u b j e c t was c o v e r e d , e s p e c i a l l y i n t h e m e d i c a l e t h i c s c o u r s e . Workshops and e l e c t i v e s e minars were a l s o h e l d . In Newfoundland, g e n e r a l p r a c t i t i o n e r s who s p e c i a l i z e i n p a l l i a t i v e c a r e r e c e i v e a one-month c o u r s e . The U n i v e r s i t e du Quebec o f f e r s an e l e c t i v e c o u r s e i n t h a n a t o l o g y l e a d i n g t o a c e r t i f i c a t e . I t would a l s o be i n t e r e s t i n g t o have i n f o r m a t i o n r e g a r d i n g p a l l i a t i v e c a r e e d u c a t i o n i n s c h o o l s o f r e h a b i l i t a t i o n , s o c i a l work, and t h e o l o g y . I can o n l y m ention t h a t from my e x p e r i e n c e a t t h e U.B.C. S c h o o l o f S o c i a l Work t h a t no c o u r s e i s o f f e r e d . The s u b j e c t i s d e a l t w i t h s ummarily i n i s o l a t e d l e c t u r e s o r i n s t u d e n t seminar p r e s e n t a t i o n s . I t would be f a i r t o c o n c l u d e from t h e above d i s c u s s i o n t h a t e d u c a t i o n and t r a i n i n g i n c a r i n g f o r d y i n g i n d i v i d u a l s and t h e i r f a m i l i e s has not been s u c c e s s f u l l y i n t e g r a t e d i n t o t h e u n i v e r s i t y and c o l l e g e systems. I t would be m i s l e a d i n g t o s u g g e s t t h a t s i m p l y because someone has t a k e n a c o u r s e on t h e s u b j e c t o f d e a t h and d y i n g t h a t t h a t p e r s o n i s p r e p a r e d and q u a l i f i e d f o r e f f e c t i v e l y w o r k i n g w i t h d y i n g p a t i e n t s and t h e i r f a m i l i e s . Of c o u r s e , o f f e r i n g such c o u r s e s i s an e x c e l l e n t b e g i n n i n g s t e p i n a d d r e s s i n g i n s t i t u t i o n a l d e n i a l . However, an e f f e c t i v e e d u c a t i o n a l program needs t o i n c l u d e p a r t i c u l a r c r i t i c a l components. A l s o , i t i s i m p o r t a n t t o n ote t h a t i f our s o c i e t y 85 i s d e a t h - d e n y i n g , t h i s means t h a t t e a c h e r s and l e a r n e r s i n d e a t h e d u c a t i o n programs a r e engaged i n " c o u n t e r c u l t u r a l e d u c a t i o n " (Morgan, 1988). An e f f e c t i v e e d u c a t i o n a l program, t h e r e f o r e , must i n p a r t attempt t o c o r r e c t i m b a l a n c e s i n our i n d i v i d u a l and s o c i a l p e r c e p t i o n s o f d e a t h . " E d u c a t i o n about d e a t h and d y i n g i n t h e b e s t sense i s p r o p e r l y e d u c a t i o n about l i f e and l i v i n g , i t r e a l l y a s s i s t s p e o p l e t o r e c a p t u r e and implement p e r s p e c t i v e s on l i f e t h a t f o r many have somehow gone s l i g h t l y out o f f o c u s " ( C o r r , 1988, p.509). Morgan (1988) s u g g e s t s t h a t e d u c a t i o n about d e a t h , d y i n g and bereavement i s b e s t when i t t a k e s p l a c e i n an atmosphere i n w h i c h t h e whole p e r s o n i s i n v o l v e d , i e . by a d d r e s s i n g c o g n i t i o n , a f f e c t , and b e h a v i o u r . Death e d u c a t i o n s h o u l d i n v o l v e a p r o c e s s o f s h a r i n g i n f o r m a t i o n , an at t e m p t t o i d e n t i f y t h e u n d e r l y i n g v a l u e s t h a t impact f e e l i n g s and a c t i o n s , and an e f f o r t t o d e v e l o p b e h a v i o u r s t o cope w i t h t h e ways i n wh i c h d e a t h impinges on l i f e ( C o r r , 1988) . Death e d u c a t i o n i s b e s t a c c o m p l i s h e d when i t i s i n t e r d i s c i p l i n a r y i n n a t u r e . I would encourage an approach i n wh i c h b o t h e m o t i o n a l and i n t e l l e c t u a l , i n d i v i d u a l and s o c i a l l y o r i e n t e d , e x p e r i e n t i a l and s c h o l a r l y f a c e t s o f t h e e d u c a t i o n a l p r o c e s s a r e welcomed. A c o u r s e i n d e a t h e d u c a t i o n can make i t s most s i g n i f i c a n t c o n t r i b u t i o n i f i t h e l p s us t o i n t e g r a t e our t o t a l s e l v e s , r a t h e r t h a n l e a d t o 86 e i t h e r ' e m o t i o n a l t r i p s ' on t h e one hand o r a l o o f i n t e l l e c t u a l a n a l y s i s on t h e o t h e r . There i s no b e t t e r a r e a i n which t o b r i n g our t h o u g h t s , s k i l l s and f e e l i n g s t o g e t h e r (Kastenbaum, 1977, p.11 c i t e d i n Morgan, 1988, p.526) " J u s t as d e a t h i s a n a t u r a l p a r t o f l i f e , o p p o r t u n i t i e s f o r e d u c a t i o n about d e a t h a r i s e i n t h e m i d s t o f l i v i n g " ( C o r r , 1988, p.509). There a r e e s s e n t i a l l y f o u r common t y p e s o f o p p o r t u n i t i e s f o r d e a t h e d u c a t i o n ( C o r r , 1988). The f i r s t two models f a l l w i t h i n t h e f o r m a l e d u c a t i o n a l system, whereas t h e l a s t two do n o t . The f i r s t model t h a t l i k e l y comes t o mind i s a f o r m a l c o u r s e on d e a t h and d y i n g , as we have a l r e a d y d i s c u s s e d i n t h i s s e c t i o n . These c o u r s e s can be t a u g h t by a s i n g l e i n s t r u c t o r o r from t h e s t a n d p o i n t o f a p a r t i c u l a r p r o f e s s i o n o r academic d i s c i p l i n e . A second o p p o r t u n i t y w i t h i n s t a n d a r d academic s e t t i n g s has m a n i f e s t e d i t s e l f i n t h e form o f u n i t s o r a s p e c t s o f c o u r s e s o f f e r e d w i t h i n t r a d i t i o n a l d i s c i p l i n e s o r s u b j e c t a r e a s . A c c o r d i n g t o C o r r (1988), t h e i n t e g r a t i o n o f d e a t h e d u c a t i o n i n t h e s e ways i n t o t h e b r o a d e r c u r r i c u l u m does not n e c e s s a r i l y d i l u t e o r fragment i t s i n t e g r i t y . " R a t h e r , i t f o l l o w s t h e p r i n c i p l e t h a t t o p i c s r e l a t e d t o d e a t h a r e t o be found t h r o u g h o u t t h e spectrum o f l i v i n g " (p.510). F u r t h e r , b r i e f e x p o sure may be l e s s t h r e a t e n i n g , and may p r e p a r e t h e way f o r f u l l e r and more e x p l i c i t t r e a t m e n t a t a l a t e r l e v e l . 87 E d u c a t i o n i s not c o n f i n e d t o t h e l i m i t e d t i m e frames o f th e c l a s s r o o m ; and e v e n t s i n l i f e t h a t i m pinge on t h e community, home, f a m i l y , e t c . , can have power and p o t e n t i a l f a r e x c e e d i n g t r a d i t i o n a l forms o f t e a c h i n g . Such e v e n t s can i n s p i r e a t l e a s t two a d d i t i o n a l forms o f d e a t h e d u c a t i o n . T h e r e f o r e , t h e t h i r d model o f d e a t h e d u c a t i o n has been c a l l e d t h e " t e a c h a b l e moment" - an o p p o r t u n i t y c r e a t e d by an event t h a t s t i m u l a t e s c o g n i t i v e i n q u i r y i n a r e l a t i v e l y non-t h r e a t e n i n g way ( C o r r , 1988) . C o r r (1988) d e s c r i b e s a f o u r t h form o f d e a t h e d u c a t i o n as "a n u r t u r i n g moment". By t h i s , he i s r e f e r r i n g t o o c c a s i o n s when normal p e o p l e a r e u p s e t i n such a way t h a t t h e y need an o p p o r t u n i t y t o v e n t and s h a r e f e e l i n g s and t o g a i n s u p p o r t from f a m i l i a r p e o p l e around them. F o r example, d e a t h o f a f r i e n d , n e i g h b o u r , o r r e l a t i v e can e x c i t e s t r o n g e m o t i o n s . I f we l e a r n t o use d e a t h as an o p p o r t u n i t y f o r growth, i t can be a v e r y i m p o r t a n t o c c a s i o n f o r l e a r n i n g how t o d e a l c o n s t r u c t i v e l y w i t h t h e problems o f l i f e . I t i s i m p o r t a n t t o n o t e t h a t no one e v e r comes t o terms w i t h d e a t h w i t h i n t h i s l i f e i n such a f i n a l way t h a t t h e r e i s n o t h i n g l e f t t o do. L i v i n g always o f f e r s some p o t e n t i a l f o r a d v a n c i n g and dee p e n i n g one's a p p r e c i a t i o n o f t h e s i g n i f i c a n c e of d e a t h . What i s e s s e n t i a l i n d e a t h e d u c a t i o n i s i n i t i a t i n g a p r o c e s s o f r e f l e c t i o n and s e l f - d i s c o v e r y , not f i n i s h i n g i t . A l t h o u g h e d u c a t i o n and t r a i n i n g i n c a r i n g f o r t h e d y i n g i n d i v i d u a l s and t h e i r f a m i l i e s has not s u c c e s s f u l l y been 88 i n t e g r a t e d i n t o t h e u n i v e r s i t y and c o l l e g e system, i n f o r m a l i n - s e r v i c e t r a i n i n g i s on t h e r i s e , e s p e c i a l l y i n l o n g - t e r m c a r e i n s t i t u t i o n s . The n e c e s s i t y o f t h i s e n t e r p r i s e i s paramount when we c o n s i d e r t h a t t h e a c t u a l d y i n g p r o c e s s i s v a r i e d . S t a f f must d e a l w i t h l o n g - t e r m d y i n g , s h o r t - t e r m d y i n g , u n e x p e c t e d d e a t h , and emergency t r a n s f e r s . How w e l l s t a f f members cope w i t h t h i s r e a l i t y depends v e r y much on each member's p e r c e p t i o n and p r e p a r a t i o n . H i s t o r i c a l l y , h e a l t h c a r e p r o f e s s i o n a l s have r e c e i v e d a r e d u c t i o n i s t a p p r o a c h t o t h e i s s u e o f d e a t h and d y i n g , r a t h e r t h a n a h o l i s t i c a p proach. I n o t h e r words, t h e y have f o c u s e d on t h e d i s e a s e and how i t a f f e c t s t h e f u n c t i o n i n g o f t h e body, r a t h e r t h a n c o n s i d e r i n g a l l o f t h e b i o - p s y c h o - s o c i o c o n c e r n s o f t h e i n d i v i d u a l . Thus, i t i s u n d e r s t a n d a b l e t h a t when f a c e d w i t h h a v i n g t o meet t h e needs o f b o t h t h e p a t i e n t and h i s / h e r f a m i l y i n p a l l i a t i v e c a r e , t h i s may encourage r e s i s t a n c e . E d u c a t i o n and t r a i n i n g s h o u l d p r e p a r e i n d i v i d u a l s t o f u n c t i o n as e f f e c t i v e l y and c o m f o r t a b l y as p o s s i b l e i n t h e i r r o l e s . By t r a i n i n g and e d u c a t i o n e f f o r t s , we a r e e s t a b l i s h i n g a v a l u e system f o r c a r e o f t h e d y i n g . 8. FACTOR SIX Conveyance and Exchange o f I n f o r m a t i o n The f i n a l f a c t o r i s t h e i s s u e o f d i a g n o s t i c i n f o r m a t i o n and t h e manner i n which- i t i s communicated (Hamric, 1977) . I n t h e l i t e r a t u r e , l i t t l e a t t e n t i o n i s p a i d t o t h e unique 89 communication problems w h i c h e x i s t i n c o n v e y i n g t h e p r o g n o s i s o f d e a t h . The i m p l i c a t i o n o f more p e o p l e d y i n g i n h o s p i t a l s i s t h a t news about d y i n g and d e a t h l a r g e l y w i l l be g i v e n i n an i n s t i t u t i o n a l i z e d s e t t i n g . How, t o whom, and what news i s g i v e n t h e n become i m p o r t a n t i s s u e s . F o r example, whether or not t h e p a t i e n t i s aware o f t h e d i a g n o s i s i s o f c r u c i a l i m p o r t a n c e t o h i s o r h e r t r e a t m e n t and c a r e , e s p e c i a l l y f o r n u r s i n g p e r s o n n e l who spend a l a r g e amount o f t i m e i n d a y - t o -day i n t e r a c t i o n w i t h p a t i e n t s . G l a s e r and S t r a u s s (1965) have g i v e n d e t a i l e d d e s c r i p t i o n s o f t h e e f f e c t o f "who, i n t h e d y i n g s i t u a t i o n , knows what about t h e p r o b a b i l i t i e s o f d e a t h " ( p . i x ) on s t a f f - p a t i e n t i n t e r a c t i o n and p a t i e n t c a r e . "Awareness c o n t e x t " was t h e t e rm G l a s e r and S t r a u s s u sed t o r e p r e s e n t t h i s component o f t h e e n v i r o n m e n t , and t h e y f o u n d t h a t f o u r c o n t e x t s were p a r t i c u l a r l y i m p o r t a n t i n t h e d y i n g s i t u a t i o n s t h e y s t u d i e d . They a l s o f o u n d t h a t t h e p a t t e r n s o f i n t e r a c t i o n w i t h i n each c o n t e x t o c c u r p r e d i c t a b l y . The f i r s t , w h i c h t h e y l a b e l l e d " c l o s e d awareness c o n t e x t " was one i n w h i c h s t a f f know t h e p a t i e n t ' s d i a g n o s i s b u t t h e p a t i e n t d i d n o t , a s i t u a t i o n w i t h w h i c h most n u r s e s a r e f a m i l i a r . P a t i e n t s must be l e d t o b e l i e v e t h a t t h e i r i l l n e s s e s a r e not f a t a l and t h a t t h i n g s w i l l t u r n out ' a l l r i g h t ' . P a t i e n t s who remain i n a c l o s e d awareness c o n t e x t u n t i l t h e y d i e have l i t t l e chance t o say good-bye t o t h e i r l i v e s , t h e i r f r i e n d s , t h e i r f a m i l i e s . They do not have a 90 chance t o p u t t h e i r b u s i n e s s and p e r s o n a l a f f a i r s i n o r d e r and may make f u t u r e p l a n s t h a t have t o be undone a f t e r t h e y d i e . F a m i l y members cannot s h a r e t h e i r g r i e f w i t h t h e i r d y i n g l o v e d one. On t h e o t h e r hand, h o s p i t a l s t a f f may p r e f e r t h e c l o s e d awareness c o n t e x t i n t h a t t h e y do not have t o t a l k about d e a t h . P a t i e n t s who a r e unaware o f t h e i r d y i n g may d i e w i t h o u t much e m o t i o n a l t u r m o i l and t h e r o u t i n e o f t h e ward w i l l t h u s be l e s s d i s t u r b e d . The second was a s u s p i c i o n c o n t e x t , i n w h i c h t h e d y i n g p e r s o n s u s p e c t s what o t h e r s know and t r i e s t o c o n f i r m o r negate t h a t s u s p i c i o n . P a t i e n t s i n t h i s awareness c o n t e x t seem always t o be on t h e o f f e n s i v e i n t r y i n g t o g e t r e a l i s t i c i n f o r m a t i o n from a d e f e n s i v e s t a f f . T h i s i s v e r y u n c o m f o r t a b l e and u n s t a b l e s t a t e f o r p a t i e n t s , as t h e r e i s no c o n s e n s u a l v a l i d a t i o n o f t h e i r p e r c e p t i o n s w i t h s t a f f , and vagueness and i n s e c u r i t y p e r s i s t . The m utual p r e t e n c e c o n t e x t e x i s t s when a l l p e o p l e i n v o l v e d know t h a t t h e p a t i e n t i s d y i n g b u t a l l i n some way t a c i t l y agree t o a c t as i f t h i s i s not so. There a r e v a r i o u s r u l e s t o f o l l o w i n p l a y i n g t h e mutual p r e t e n c e game. Dangerous t o p i c s a r e a v o i d e d , w h i l e s a f e t o p i c s a r e p e r m i s s i b l e f o r d i s c u s s i o n as t h e y s i g n i f y t h a t l i f e i s p r o c e e d i n g as u s u a l . One o f t h e consequences o f t h e mutual p r e t e n c e c o n t e x t i s t h a t p a t i e n t s may have some p r i v a c y and d i g n i t y i n t h e i r d y i n g . However, as i n t h e o t h e r awareness 91 c o n t e x t s , i s o l a t i o n and l o n e l i n e s s can o c c u r . H o s p i t a l ward o r g a n i z a t i o n and mood may be l e s s t e n s e t h a n i n s u s p e c t e d awareness. S t a f f may f e e l more c o m f o r t a b l e i n t h a t t h e y do not have t o work " p s y c h o l o g i c a l l y " w i t h a d y i n g p a t i e n t . The c o n t e x t o f open awareness e x i s t s when a l l p e o p l e i n v o l v e d acknowledge o p e n l y t h e i r knowledge t h a t t h e p a t i e n t i s d y i n g . S t a f f and p a t i e n t s may have d i f f e r e n t e x p e c t a t i o n s o f each o t h e r i n terms o f t h e d y i n g p r o c e s s , b u t one o f t h e p o s i t i v e a s p e c t s o f open awareness i s t h a t t h e s e d i s c r e p a n c i e s can be d i s c u s s e d . Awareness o f impending d e a t h g i v e s p a t i e n t s a chance t o c l o s e t h e i r l i v e s w i t h some c o n t r o l . They can p l a n f o r t h e i r f a m i l y , f i n i s h p r o j e c t s , say f a r e w e l l t o f r i e n d s . They can p l a y a p a r t i n managing t h e i r own d e a t h . On t h e o t h e r hand, some p a t i e n t s may have a g r e a t d i f f i c u l t y i n a c c e p t i n g knowledge o f t h e i r impending d e a t h . W i t h t h e s e p e o p l e , open awareness may b r i n g much f e a r and u n r e s o l v e d d e s p a i r . T h i s c o n c e r n may be e s p e c i a l l y i m p o r t a n t f o r t h e m e n t a l l y i l l who t e n d t o have l e s s s k i l l s i n c o p i n g w i t h s t r e s s . P i n e (1975), wrote a paper d e s c r i b i n g and d i s c u s s i n g some o f t h e un i q u e a s p e c t s o f t h e i n s t i t u t i o n a l i z e d communication o f messages about d y i n g and d e a t h . I n h i s paper, he d e v e l o p s two communication models which d e s c r i b e t h e c h a n n e l s f o r messages about d y i n g and d e a t h . I n s t i t u t i o n a l messages about d y i n g a r e d e s c r i b e d s e p a r a t e l y from i n s t i t u t i o n a l messages 92 about d e a t h . "Namely, messages about d y i n g a r e f u t u r e -o r i e n t e d p r o g n o s t i c a t i o n s : w h i l e messages about d e a t h a r e o f a p a s t e v e n t , t h a t i t , a c o m p l e t e d o c c u r r e n c e " ( P i n e , 1975, p . 2 ) . News about d y i n g was shown t o be d i f f e r e n t t h a n news about d e a t h i n t h e way t h e y a r e communicated. Most p h y s i c i a n s f e e l t h a t t h e g i v i n g o f t h e d i a g n o s i s i s t h e i r r e s p o n s i b i l i t y . However, Mount (1978) d i s c o v e r e d t h a t most p h y s i c i a n s a r e not i n f a v o u r o f t e l l i n g t h e p a t i e n t o f impending d e a t h b u t would want t o be t o l d t h e m s e l v e s . T h i s d e m o n s t r a t e s a d i v e r g e n c e o f a t t i t u d e s towards news about d e a t h . P a r t o f t h e communication p r o b l e m may be r e l a t e d t o t h e i r p e r s o n a l a n x i e t y about d e a t h , and p a r t l y t o t h e i r m e d i c a l t r a i n i n g w h i c h l a c k s i n i n s t r u c t i o n on how t o communicate bad news. "Two o f t h e g u i d e l i n e s g i v e n t o m e d i c a l s t u d e n t s r e g a r d i n g communication about d e a t h a r e , 'do not t e l l t h e p a t i e n t a n y t h i n g w h i c h might i n d u c e p s y c h o p a t h o l o g y . . . and hope must n e v e r d i e t o o f a r ahead o f t h e p a t i e n t ' " ( P i n e , 1975, p . 3 ) . Of c o u r s e , t h i s f e a r would be i n t e n s i f i e d i f one was d e a l i n g w i t h a d y i n g p e r s o n who was a l r e a d y s u f f e r i n g from p s y c h o p a t h o l o g y . P i n e (1975) d e s c r i b e s how when t h e p h y s i c i a n , who i s t h e g a t e k e e p e r t o i n s t i t u t i o n a l c a r e , has d e c i d e d t h a t a p a t i e n t has gone from " h a v i n g a chance t o r e c o v e r " t o " d y i n g " he e i t h e r i m p l i c i t l y o r e x p l i c i t l y communicates t h e i n f o r m a t i o n t o t h e n u r s i n g s t a f f . When t h e d o c t o r has g i v e n t h e 93 " o f f i c i a l " message, b o t h t h e p h y s i c i a n and n u r s i n g s t a f f a l t e r t h e i r h a n d l i n g o f t h e p a t i e n t . V e r y o f t e n , t h e h o s p i t a l i z e d p a t i e n t who i s d y i n g i s not t o l d d i r e c t l y , and " o f t e n becomes and remains an a t o m i z e d i n d i v i d u a l i n t h e s e r i e s o f i n t e r c o n n e c t e d networks o f i n s t i t u t i o n a l i z e d communicating i n t e r a c t o r s " ( P i n e , 1975, p . 3 ) . Who w i l l t a l k t o whom about t h e d y i n g p a t i e n t was found by P i n e t o be an i n t r i c a t e s e r i e s o f networks o f communication. The f l o w o f t h e message o f d y i n g can be c o n c e i v e d o f as s t a r t i n g w i t h t h e p h y s i c i a n and s p r e a d i n g i n m u l t i p l e s t e p s "from d o c t o r t o n u r s e , d o c t o r and/or n u r s e t o f a m i l y , t o o t h e r h o s p i t a l s t a f f , t o o t h e r p a t i e n t s , and t o o t h e r s i n an i n s t i t u t i o n a l l y s t r u c t u r e d manner" ( P i n e , 1975, p . 5 ) . News u s u a l l y s p r e a d s r a p i d l y and f a i r l y c o m p l e t e l y soon a f t e r t h e d o c t o r r e a c h e s t h e i r d e c i s i o n t o d i s s e m i n a t e t h e message o f d y i n g . P i n e (1975) s u g g e s t s t h a t t h e r e a r e two gaps i n messages about d y i n g . The f i r s t i s t h e awareness gap between t h e knowledgeable p e r s o n n e l and t h e d y i n g p a t i e n t and t h e f a m i l y . B e i n g aware o f a p e r s o n ' s impending d e a t h i m p l i c i t l y f o r c e s t h e p h y s i c i a n s t o d e c i d e whether o r n o t , t o whom, and how t h e y s h o u l d communicate such i n f o r m a t i o n . There a r e p r i m a r i l y f o u r c h a n n e l s a v a i l a b l e t o attempt t o b r i d g e t h e awareness gap. F i r s t , t h e r e i s t h e i n s t i t u t i o n a l c h a n n e l o f h o s p i t a l p r o c e d u r e s such as t h e c r i t i c a l l i s t and i n t e n s i v e c a r e u n i t s . Second i s t h e c h a n n e l o f roundabout e x p l a n a t i o n s t h r o u g h 94 o t h e r s , by e n c o u r a g i n g n u r s e s and o t h e r s t a f f t o be t r u t h f u l , a t l e a s t t o t h e d y i n g p a t i e n t s f a m i l y . The p a t i e n t i s seldom s e n t news d e l i b e r a t e l y t h r o u g h t h i s c h a n n e l . T h i r d i s t h e c h a n n e l o f p r o g r e s s i v e l y w o r s e n i n g s t a t e m e n t s by t r a c i n g t h e h i s t o r y o f t h e i l l n e s s and g i v i n g l e s s e n c o u r a g i n g news w i t h each s t e p . P i n e says t h a t most o f t e n t h e f u l l t r u t h about d y i n g does not emerge d i r e c t l y but i s i m p l i c i t i n g e n e r a l b e h a v i o u r a l p a t t e r n s . F i n a l l y , t h e r e i s t h e c h a n n e l o f f r a n k e x p l a n a t i o n s . However, even t h e n t h e e v e n t u a l c o u r s e o f t h e i l l n e s s i s o f t e n o m i t t e d . The second gap i n messages i s what P i n e r e f e r s t o as an " i m p o r t a n c e gap". " T h i s o c c u r s p r i m a r i l y because o f t h e v a s t d i f f e r e n c e between t h e r e l a t i o n s h i p o f d o c t o r t o p a t i e n t and o f f a m i l y t o p a t i e n t " ( P i n e , 1975, p . 5 ) . P h y s i c i a n s do not s t a n d t o s u f f e r as g r e a t l y from t h e p o t e n t i a l l o s s o f a p a t i e n t l i f e as does t h e f a m i l y o f t h a t p a t i e n t . T h i s gap i s u s u a l l y b r i d g e d t h r o u g h t h e c h a n n e l o f p r o g r e s s i v e l y w o r s e n i n g s t a t e m e n t s . The message i s made more e a s i l y a c c e p t a b l e by e s t a b l i s h i n g an h i s t o r i c a l p r o g r e s s i o n l e a d i n g t o e v e n t u a l d e a t h . The manner o f announcement o f a d e a t h a l s o g e n e r a l l y f o l l o w s a w e l l - e s t a b l i s h e d p a t t e r n . The announcement i s u s u a l l y p r e c e d e d w i t h some " m e d i c a l l y r e l e v a n t c a u s a l a n t e c e d e n t " (Sudnow, 1967, p.137) and i s t o l d i n a f a c t u a l s t r a i g h t f o r w a r d manner. The news about d e a t h a l s o s p r e a d s i n 95 a p a t t e r n e d i n s t i t u t i o n a l manner. "Those who a r e e n t i t l e d t o a d i r e c t communication about d e a t h , can be c o n c e i v e d o f as f o r m i n g a s e r i e s o f c o n c e n t r i c r i n g s around t h e dead p e r s o n , w i t h each r i n g b e i n g d i f f e r e n t i a t e d from t h e o t h e r s by. k i n s h i p , age groups, and f r i e n d s h i p d i s t i n c t i o n s and w i t h t h e oc c u p a n t s o f each r i n g d i f f e r e n t i a l l y e x p e c t i n g t o be i n f o r m e d o f t h e d e a t h " ( P i n e , 1975, p . 6 ) . T h e r e f o r e , t h e f l o w o f t h e message s t a r t s w i t h h o s p i t a l s t a f f , s p r e a d s t o t h e d o c t o r , who t h e n t e l l s t h e immediate f a m i l y , who s p r e a d t h e news on outward ( P i n e , 1975). I n d i s c u s s i n g t h e gaps i n messages, i t appears t h a t t h e r e i s n o t an awareness gap as a d e a t h i s communicated d i r e c t l y and e x p l i c i t l y . However, t h e r e i s a n o t a b l e i m p o r t a n c e gap. The i m p o r t a n c e o f t h e news t h a t d e a t h has o c c u r r e d i s v e r y d i f f e r e n t f o r t h e d o c t o r t h a n f o r t h e f a m i l y o f t h e dead p e r s o n . The gap i s b r i d g e d by d i s s e m i n a t i n g news by " p r o p e r " i n s t i t u t i o n a l means such as o b s c u r i n g v i s i b i l i t y o f d e a t h t o e v e n t u a l announcement by t h e " p r o p e r " p e r s o n , namely, t h e p h y s i c i a n . News about d e a t h , t h e n , a r e t r a n s m i t t e d l a r g e l y by i n s t i t u t i o n a l c h a n n e l s o f communication. T h e r e f o r e , i n g e n e r a l b o t h messages a r e d i s t a s t e f u l . The news a r e i n o p p o s i t i o n t o t h e a t t i t u d e t h a t l i f e ought t o be p r o l o n g e d and t h a t e v e r y e f f o r t s h o u l d be aimed a t p r e v e n t i n g i l l n e s s l e a d i n g t o d e a t h . A l s o , t h e i n s t i t u t i o n a l s e n d e r s o f t h e message u s u a l l y have a r e l a t i v e l y s m a l l e m o t i o n a l 96 investment i n the s i t u a t i o n , whereas the r e c i p i e n t s most often have a large one. Both messages are permanent, and place the concept of dying into delimited temporal perspective. F i n a l l y , there i s the underlying factor that both messages are d i f f i c u l t and embarrassing to communicate. However, since news about dying i s somehow received by the dying patient's family and at times by the patient themselves, t h i s suggests that there must be channels of communication over which such information may flow. These channels l a r g e l y are i n s t i t u t i o n a l i z e d and they flow by following c u l t u r a l l y -induced patterns of behaviour. 9. SUMMARY In t h i s chapter an analysis of studies r e l a t i n g to the mentally i l l and the meaning of death was given. These few studies have raised more questions than answers such as, do the mentally i l l experience death and dying i n the same way as "normal" people do? From F e i f e l ' s series of studies i t can be suggested that the mentally i l l view death as a time of peace, and that they have a great need to make amends. It was also thought that death would occur by a traumatic event. This i s an area that more research w i l l have to be conducted. It was also suggested that appropriate practices i n caring for the dying had not reached people with a higher degree of psychopathology . In order to address t h i s 97 s u g g e s t i o n a d i s c u s s i o n o f s i x f a c t o r s t h a t might i n f l u e n c e t h e t r a n s i t i o n from t h e o r y i n t o p r a c t i c e i n c a r e f o r t h e d y i n g i n a m e n t a l i n s t i t u t i o n f o l l o w e d . These f a c t o r s were p e r s o n a l and p r o f e s s i o n a l d e a t h a n x i e t y , t h e o r g a n i z a t i o n o f t h e h o s p i t a l system and i t s i n h e r e n t p r e s s u r e s , r o l e e x p e c t a t i o n s p l a c e d upon t h e h e a l t h c a r e p r o f e s s i o n a l , e d u c a t i o n and t r a i n i n g i n c a r i n g f o r d y i n g p e r s o n s and t h e i r f a m i l i e s , teamwork, and c o n v e y i n g and e x c h a n g i n g d i a g n o s t i c i n f o r m a t i o n . The d e f i c i e n c i e s t h a t e x i s t i n t h e c a r e o f t h e t e r m i n a l l y i l l c annot be r e l a t e d t o j u s t one f a c t o r . A l l o f t h e above f a c t o r s must be t a k e n i n t o c o n s i d e r a t i o n . These a r e by no means a l l o f t h e f a c t o r s e i t h e r . These have been i d e n t i f i e d because t h e y a r e t h e most p r e v a l e n t and a l s o because o t h e r f a c t o r s can be c o n t a i n e d w i t h i n t h e l a r g e r i s s u e . How w e l l t h e s e f a c t o r s a r e d e a l t w i t h w i l l d e t e r m i n e t h e a p p r o p r i a t e n e s s o f c a r e g i v e n t o t h e d y i n g i n d i v i d u a l and t h e i r f a m i l i e s , whether m e n t a l l y i l l o r n o t . The i s s u e o f d e a t h a n x i e t y i s an i n t e r e s t i n g one. As a v a r i a b l e i t i s a v e r y u n s t a b l e one, y e t t h e l i t e r a t u r e s u g g e s t s t h a t i f i t i s p r e s e n t i t can l e a d t o n e g a t i v e b e h a v i o u r such as d i s t a n c i n g and w i t h d r a w i n g from t h e d y i n g i n d i v i d u a l . Death has a l s o been c o r r e l a t e d w i t h such v a r i a b l e s as sex, age, m a r i t a l s t a t u s , d e a t h o f a s i g n i f i c a n t o t h e r , and l e n g t h o f o c c u p a t i o n a l e x p e r i e n c e , w i t h i n t e r e s t i n g r e s u l t s . T h i s w i l l be d u p l i c a t e d i n t h i s s t u d y . The 98 r e m a i n i n g f a c t o r s were i n c l u d e d and d i s c u s s e d t o h e l p e x p l a i n t h e s i t u a t i o n t h a t might e x i s t a t R i v e r v i e w H o s p i t a l . How o r g a n i z a t i o n s such as h o s p i t a l s accommodate d y i n g p a t i e n t s , e s p e c i a l l y d y i n g e l d e r l y , was d i s c u s s e d , and p o s s i b l e r e a s o n s f o r r e s i s t a n c e t o p a l l i a t i v e c a r e . E x p e c t a t i o n s o f p r o f e s s i o n a l r o l e s can a l s o be i m p o r t a n t , e s p e c i a l l y i f t h e y a r e s t e r e o t y p e d and c i r c u m s c r i b e d . These e x p e c t a t i o n s were shown t o have i m p o r t a n t i m p l i c a t i o n s as t o how s t a f f members w i l l behave i n a g i v e n s i t u a t i o n . Team f u n c t i o n i n g w i l l a l s o a f f e c t communication and c o o r d i n a t i o n o f c a r e . C h a r a c t e r i s t i c s n e c e s s a r y f o r team f u n c t i o n i n g and t h e d e v e l o p m e n t a l s t a g e s o f teamwork were o u t l i n e d . The e x t e n t and q u a l i t y o f e d u c a t i o n and t r a i n i n g i n c a r i n g f o r t h e d y i n g w i l l a l s o a f f e c t t h e r a p e u t i c c a r e g i v e n t o t h e d y i n g p e r s o n . The f i n a l d e s c r i p t i v e f a c t o r was c o n v e y i n g and e x c h a n g i n g d i a g n o s t i c i n f o r m a t i o n . The s t u d i e s o u t l i n e d s u g g e s t t h a t t h e more open t h e communication, t h e l e s s i s o l a t i n g d e a t h w i l l be. In t h e n e x t c h a p t e r t h e methodology used t o s t u d y t h e s e f a c t o r s a t R i v e r v i e w H o s p i t a l w i l l be o u t l i n e d . CHAPTER THREE Re s e a r c h D e s i g n 1. LEVEL OF DESIGN The purpose o f t h i s d e s c r i p t i v e s t u d y was t o i n v e s t i g a t e t h e p e r c e p t i o n s o f h e a l t h c a r e p r o f e s s i o n a l s r e g a r d i n g p r a c t i c e w i t h d y i n g p a t i e n t s i n t h e G e r i a t r i c D i v i s i o n of R i v e r v i e w H o s p i t a l . The a n a l y s i s o f t h e p e r c e p t i o n s o f c u r r e n t p r a c t i c e by t h e v a r i o u s p r o f e s s i o n a l s was a c c o m p l i s h e d i n r e f e r e n c e t o s i x f a c t o r s i d e n t i f i e d as h a v i n g an e f f e c t on t h e t h e r a p e u t i c c a r e o f t h e d y i n g p e r s o n . These f a c t o r s a r e : 1. P e r s o n a l and P r o f e s s i o n a l d e a t h a n x i e t y 2. O r g a n i z a t i o n o f t h e h o s p i t a l system 3. E x p e c t a t i o n s o f p r o f e s s i o n a l r o l e s 4. Teamwork 5. E d u c a t i o n and t r a i n i n g i n c a r i n g f o r t h e d y i n g and t h e i r f a m i l i e s 6. Conveyance and Exchange o f d i a g n o s t i c i n f o r m a t i o n . The g o a l o f t h e s t u d y was t o d e t e r m i n e i f any o f t h e s e f a c t o r s p l a y e d a r o l e i n t h e way t h e d y i n g p a t i e n t and t h e i r f a m i l i e s were b e i n g c a r e d f o r , and t o see how t h e s e a r e a s o f p r a c t i c e were b e i n g done, and w h i c h s t a f f f e l t change was needed. To what e x t e n t i s p a l l i a t i v e c a r e b e l i e v e d t o be a l r e a d y p r a c t i s e d , and what a r e a s o f p r a c t i c e can be changed and 100 improved upon? To what e x t e n t i s t h e r e a need f o r a f o r m a l i z e d p a l l i a t i v e c a r e program? The c o n c e p t u a l framework h e l p e d t o o r d e r t h e d a t a and g e n e r a t e d d e s c r i p t i o n s and e x p l a n a t i o n s t h a t c o n t r i b u t e d t o an u n d e r s t a n d i n g o f t h e p r o b l e m s t u d i e d and t o f u r t h e r p l a n i n t e r v e n t i o n and development o f r e s e a r c h . The v a r i a b l e o f d e a t h a n x i e t y was measured u s i n g t h e Death A n x i e t y S c a l e (DAS), d e v e l o p e d and t e s t e d by D.I. Templer (1969). The DAS s c o r e s were c o r r e l a t e d w i t h v a r i o u s p e r s o n a l v a r i a b l e s such as sex, age, m a r i t a l s t a t u s , l e n g t h o f work e x p e r i e n c e , e x p e r i e n c e o f d e a t h o f a s i g n i f i c a n t o t h e r . I t was p r e d i c t e d t h a t : 1) Death a n x i e t y w i l l be g r e a t e r f o r f e m a l e s t h a n f o r males. 2) Death a n x i e t y w i l l d e c r e a s e as age i n c r e a s e s . 3) Death a n x i e t y w i l l be g r e a t e r f o r m a r r i e d p e o p l e t h a n f o r s i n g l e p e o p l e . 4) Death a n x i e t y w i l l v a r y i n v e r s e l y w i t h l e n g t h o f e x p e r i e n c e w o r k i n g a t R i v e r v i e w H o s p i t a l . 5) Death w i l l v a r y i n v e r s e l y w i t h p e r s o n a l e x p e r i e n c e f o d e a t h o f a s i g n i f i c a n t o t h e r . As w e l l , DAS s c o r e s were c o r r e l a t e d w i t h v a r i o u s a r e a s o f p r o f e s s i o n a l i s m , such as t h e work and e d u c a t i o n a l e x p e r i e n c e o f t h e r e s p o n d e n t . I t -was p r e d i c t e d t h a t : 101 6) Death a n x i e t y w i l l v a r y i n v e r s e l y w i t h p a s t work e x p e r i e n c e w i t h t h e d y i n g as a s t u d e n t . 7) Death a n x i e t y w i l l v a r y i n v e r s e l y w i t h p a s t work e x p e r i e n c e w i t h t h e d y i n g as a p r o f e s s i o n a l . 8) Death a n x i e t y w i l l i n c r e a s e i f c u r r e n t l y w o r k i n g w i t h t h e d y i n g and t h e i r f a m i l i e s . 9) Death a n x i e t y w i l l v a r y i n v e r s e l y w i t h f o r m a l e d u c a t i o n a l e x p e r i e n c e and t r a i n i n g i n w o r k i n g w i t h t h e d y i n g and t h e i r f a m i l i e s . 10) Death a n x i e t y w i l l v a r y i n v e r s e l y w i t h i n f o r m a l e d u c a t i o n a l e x p e r i e n c e and t r a i n i n g i n w o r k i n g w i t h t h e d y i n g and t h e i r f a m i l i e s . 11) Death a n x i e t y w i l l v a r y i n v e r s e l y w i t h f e e l i n g o f competence and/or c o n f i d e n c e i n w o r k i n g w i t h d y i n g p e o p l e and t h e i r f a m i l i e s . These p r e d i c t i o n s a r e b ased on t h e p r e v i o u s s t u d i e s on c o r r e l a t e s o f d e a t h a n x i e t y t h a t have been d i s c u s s e d i n t h e L i t e r a t u r e Review. The r e m a i n i n g f i v e v a r i a b l e s p r o v i d e d d e s c r i p t i v e i n f o r m a t i o n s p e c i f i c t o R i v e r v i e w H o s p i t a l and t h e p r a c t i c e s and p o l i c i e s r e g a r d i n g work w i t h t h e d y i n g m e n t a l l y i l l e l d e r l y i n t h e G e r i a t r i c D i v i s i o n . To r e p e a t , t h e f a c t o r s which c o m p r i s e t h e c o n c e p t u a l framework have a l l been i d e n t i f i e d and e x t r a c t e d from l i t e r a t u r e d e s c r i b i n g t h e s i t u a t i o n i n m e d i c a l i n s t i t u t i o n s 102 where p e o p l e may d i e . An as s u m p t i o n i s b e i n g made t h a t t h e s e f a c t o r s w i l l be e q u a l l y v a l i d i n a m e n t a l i n s t i t u t i o n s u ch as R i v e r v i e w H o s p i t a l . T h i s a s s u m p t i o n i s b ased on t h e f a c t t h a t m e n t a l i n s t i t u t i o n s a r e o f t e n c a t e g o r i z e d t o g e t h e r w i t h m e d i c a l i n s t i t u t i o n s as b e i n g s i m i l a r i n o r g a n i z a t i o n a l s t r u c t u r e and mandate. I n a c t u a l i t y , t h e p h i l o s o p h y , and m i l i e u t h a t e x i s t i n t h e m e n t a l h o s p i t a l may s i g n i f i c a n t l y d i f f e r , and t h u s change t h e n a t u r e o f t h e s e f a c t o r s . The c o n c l u s i o n s made i n t h i s s t u d y r e p r e s e n t o n l y a b e g i n n i n g a n a l y s i s , and t h e r e f o r e , must be c a u t i o u s l y g e n e r a l i z e d t o o t h e r m e n t a l i n s t i t u t i o n s . 2. CHOICE OF METHODOLOGICAL ORIENTATION T h i s r e s e a r c h i s e s s e n t i a l l y q u a n t i t a t i v e i n n a t u r e , a l t h o u g h t h e r e a r e q u a l i t a t i v e a s p e c t s woven t h r o u g h t h e d e s i g n . The two approaches a r e c o m p a t i b l e as d i f f e r e n t l e v e l s o f i n f o r m a t i o n a r e b e i n g sought. F i r s t , t h e q u a n t i t a t i v e a s p e c t s o f t h e d e s i g n a r e i n c l u d e d t o d e t e r m i n e t h e d i s t r i b u t i o n and f r e q u e n c y o f t h e r e s p o n s e s t o t h e v a r i o u s q u e s t i o n s , as w e l l as t o t e s t l e v e l s o f a s s o c i a t i o n between DAS and t h e v a r i a b l e s l i s t e d above. The q u a n t i t a t i v e a s p e c t s o f t h e paper do not t e s t f o r c a u s e - e f f e c t h y p o t h e s e s , o n l y c o r r e l a t i o n s . F o r ' example, do t h e s c o r e s from t h e s t a n d a r d i z e d measure, t h e Death A n x i e t y S c a l e , c o r r e l a t e w i t h 103 work and e d u c a t i o n a l e x p e r i e n c e , sex, age, m a r i t a l s t a t u s , o r l e n g t h o f c a r e e r i n a p a r t i c u l a r work s e t t i n g ? Hypotheses can be c r e a t e d about t h e s o c i a l r e a l i t y t h a t t h e q u a n t i t a t i v e approaches a d d r e s s . These a s s o c i a t i o n s were t e s t e d t o see whether o r not c e r t a i n p e r s o n a l o r p r o f e s s i o n a l c h a r a c t e r i s t i c s v a r y w i t h d e a t h a n x i e t y . I t i s t h o u g h t t h a t t h e p r e s e n c e o f d e a t h a n x i e t y i n a p e r s o n w i l l a f f e c t t h e t h e r a p e u t i c c a r e g i v e n t o a d y i n g i n d i v i d u a l and t h e i r f a m i l i e s . I n a d d i t i o n , q u a l i t a t i v e methods a r e u t i l i z e d i n t h e d e s i g n , e s p e c i a l l y i n t h e s e c t i o n o f t h e s u r v e y q u e s t i o n n a i r e t h a t measures s t a f f p e r c e p t i o n s o f i n s t i t u t i o n a l p r a c t i c e s and p o l i c i e s a round d e a t h i n t h e G e r i a t r i c D i v i s i o n . G r i n n e l l e x p l a i n s t h a t " q u a l i t a t i v e r e s e a r c h methods assume t h a t s u b j e c t i v e d i m e n s i o n s o f human e x p e r i e n c e a r e c o n t i n u o u s l y c h a n g i n g and cannot be s t u d i e d u s i n g p r i n c i p l e s o f q u a n t i t a t i v e r e s e a r c h m e t h o d o l o g i e s " (1988, p.186). T h e r e f o r e , t h e i n t e n t i o n o f t h e q u a l i t a t i v e methods was t o e v a l u a t e t h e s u b j e c t i v e u n d e r s t a n d i n g o f what t h e p r o f e s s i o n a l s b e l i e v e s h o u l d be a c c o m p l i s h e d and done t o change t h i s a r e a o f p r a c t i c e . Of c o u r s e , t h e q u a l i t a t i v e a n a l y s i s can o n l y be v a l i d a t t h e p o i n t and t i m e o f t h e r e s e a r c h s t u d y . The s e c t i o n o f t h e s u r v e y q u e s t i o n n a i r e m e a s u r i n g s t a f f p e r c e p t i o n i s d e s i g n e d i n a way t h a t can be c l o s e d - e n d e d o r open-ended. F o r example, q u e s t i o n 33 asks "Do 104 you work as a member o f a team when you a r e w o r k i n g w i t h t h e d y i n g and t h e i r f a m i l i e s ? " . I f t h e r e s p o n d e n t s answer "yes" o r "no" t h e q u e s t i o n i s e s s e n t i a l l y c l o s e d - e n d e d . However, i f t h e y choose t o answer "depends", t h e n t h e y a r e r e q u i r e d t o w r i t e i n t h e space p r o v i d e d t h e r a t i o n a l e as t o why t h e y responded t h a t way. T h i s a l l o w s t h e q u e s t i o n t o be open-ended as w e l l . Respondents have t h e o p p o r t u n i t y t o s h a r e t h e i r p o i n t s o f v i e w about t h e p a l l i a t i v e c a r e s i t u a t i o n . Of c o u r s e , t h e r e i s always t h e danger t h a t t h e r e may be some i n c o n s i s t e n c y between t h e r e s p o n s e and a c t u a l b e h a v i o u r . The q u a l i t a t i v e n a t u r e o f t h e d e s i g n i s l e s s i n t r u s i v e , w h i c h has i m p o r t a n t i m p l i c a t i o n s when c o n s i d e r i n g t h e s e n s i t i v e n a t u r e o f t h e t o p i c under c o n s i d e r a t i o n . 3. SAMPLING DESIGN T h i s s t u d y uses n o n p r o b a b i l i t y s a m p l i n g , p r e c i s e l y , a v a i l a b i l i t y s a m p l i n g . A m u l t i g r o u p d e s i g n was u t i l i z e d . From a l i s t o f a l l s t a f f i n t h e G e r i a t r i c D i v i s i o n , p o t e n t i a l r e s p o n d e n t s from f i v e p r o f e s s i o n a l groups were c o n t a c t e d . A t o t a l o f 58 p o t e n t i a l r e s p o n d e n t s were f i n a l l y s u r v e y e d . The p r o f e s s i o n a l groups s u r v e y e d and t h e number o f r e s p o n d e n t s i n each c a t e g o r y were: g e n e r a l p h y s i c i a n s (10), p s y c h i a t r i s t s (10) , h e a l t h c a r e workers (25), p a s t o r a l c a r e w o r k e r s , (5) , and s o c i a l workers (8) . The s i z e o f t h e sample f o r each group 105 was d e t e r m i n e d i n r e f e r e n c e t o t h e number o f s t a f f i n each o f t h e d e p artments. F o r example, t h e r e i s a l a r g e number o f h e a l t h c a r e w o r kers w o r k i n g i n t h e G e r i a t r i c D i v i s i o n , as opposed t o s o c i a l w o r k ers o f w h i c h t h e r e a r e o n l y e i g h t . T h e r e f o r e , t h e sample s i z e f o r t h e h e a l t h c a r e w o r k e r s i s l a r g e r i n r e l a t i o n t o t h e o t h e r p r o f e s s i o n a l groups s u r v e y e d i n o r d e r t o i n c r e a s e t h e r e p r e s e n t a t i v e n e s s o f o p i n i o n s . The o r i g i n a l p r o p o s a l r e q u i r e d t h a t o c c u p a t i o n a l t h e r a p i s t s , p h y s i o t h e r a p i s t s , r e c r e a t i o n a l t h e r a p i s t s , d i e t i c i a n s , p s y c h i a t r i c n u r s e s , and p s y c h o l o g i s t s would a l s o be sampled. T h i s f i r s t s a m p l i n g d e s i g n would have e n s u r e d t h a t a l l members o f t h e 'team' would have been s u r v e y e d t o c r e a t e a more complete p i c t u r e o f p e r c e p t i o n s o f p a l l i a t i v e c a r e p r a c t i c e a t R i v e r v i e w H o s p i t a l . However, t h e n a t u r e o f t h e f i n a l sample was d e t e r m i n e d by t h e S c i e n t i f i c Review B o a r d o f R i v e r v i e w H o s p i t a l . The r a t i o n a l e u sed t o d e t e r m i n e t h e f i n a l s a m p l i n g p r o c e d u r e was t o i n c l u d e o n l y f i v e p r o f e s s i o n s who were assumed t o have t h e g r e a t e s t c o n t a c t w i t h a d y i n g p a t i e n t and h i s o r h e r f a m i l y . P s y c h i a t r i c n u r s e s were e x c l u d e d due t o t h e f a c t t h a t , a t t h e t i m e t h e p r o p o s a l was b e i n g p r o c e s s e d by t h e S c i e n t i f i c Review B o a r d o f R i v e r v i e w H o s p i t a l , t h e i r p r o f e s s i o n a l u n i o n was i n a r b i t r a t i o n and a s t r i k e was i n e f f e c t . The o p e r a t i o n a l d e f i n i t i o n s f o r each p r o f e s s i o n a r e t a k e n from t h e B r i t i s h Columbia M e n t a l H e a l t h S o c i e t y j o b d e s c r i p t i o n forms and can be f o u n d i n Appendix A. 106 4. DATA COLLECTION a) P r o c e d u r e f o r Data C o l l e c t i o n The d a t a was c o l l e c t e d by means o f c i r c u l a t i n g 58 w r i t t e n q u e s t i o n n a i r e s (see Appendix D) t o g e n e r a l p h y s i c i a n s (10), p s y c h i a t r i s t s ( 10), h e a l t h c a r e workers (25), s o c i a l w o r k ers (8), and p a s t o r a l c a r e workers (5) . The c r o s s - s e c t i o n a l s u r v e y was c o m p l e t e d by a b r o a d mix o f p e o p l e from d i f f e r e n t age gr o u p s , e d u c a t i o n a l e x p e r i e n c e , work e x p e r i e n c e , and y e a r s o f e x p e r i e n c e a t R i v e r v i e w H o s p i t a l . Thus, a d e s c r i p t i o n o f t h e s o c i a l r e a l i t y as e x p e r i e n c e d by t h e r e s p o n d e n t s was g e n e r a t e d from t h e d a t a c o l l e c t e d . The s u r v e y was d i s t r i b u t e d a t no c o s t t h r o u g h t h e i n t r a h o s p i t a l m a i l i n g system and by hand. A p e r i o d o f two weeks was g i v e n i n o r d e r t o r e s p o n d , a f t e r w h i c h a f o l l o w - u p l e t t e r (see Appendix E) was s e n t t o department managers and i n d i v i d u a l s t o remi n d t h o s e who had not responded t o do so. As t h e r e s p o n d e n t s were not a s k e d t o i d e n t i f y t h e m s e l v e s , i t was i m p o s s i b l e t o know w h i c h i n d i v i d u a l s had not responded, t h u s f o l l o w - u p l e t t e r s were s e n t t o a l l i n v o l v e d . The c o m p l e t e d q u e s t i o n n a i r e s were r e t u r n e d t o t h e G e r i a t r i c D i v i s i o n S o c i a l Work o f f i c e where a s e p a r a t e m a i l b o x had been c r e a t e d f o r t h e r e s e a r c h e r . No a c c e s s was a v a i l a b l e t o o t h e r p e o p l e i n o r d e r t h a t s t r i c t c o n f i d e n t i a l i t y o f t h e r e s u l t s be m a i n t a i n e d . 107 b) Advantages and D i s a d v a n t a g e s o f W r i t t e n Q u e s t i o n n a i r e Survey The w r i t t e n q u e s t i o n n a i r e s u r v e y method was e l e c t e d as method o f c h o i c e f o r s e v e r a l r e a s o n s . F i r s t , i t i s t h e l e a s t t i m e - c o n s u m i n g f o r t h e r e s p o n d e n t , and i t i s most c o n v e n i e n t t o a d m i n i s t e r . The group t o be s u r v e y e d was t o o l a r g e t o c onduct f a c e - t o - f a c e i n t e r v i e w s i n t h e t i m e a v a i l a b l e t o t h e r e s e a r c h e r . As w e l l , t h e t o p i c under c o n s i d e r a t i o n was v e r y p e r s o n a l and was a d d r e s s i n g a p o l i t i c a l l y - s e n s i t i v e i s s u e . I t was hoped t h a t more c a n d i d r e s u l t s might be o b t a i n e d i f t h e r e s p o n d e n t s a r e a b l e t o answer t h e q u e s t i o n n a i r e i n p r i v a t e a t t h e t i m e o f t h e i r c h o i c e . U n d e r s t a n d a b l y , a w r i t t e n q u e s t i o n n a i r e c o n c e r n i n g i s s u e s o f p a l l i a t i v e c a r e and d e a t h and d y i n g i s v i e w e d as b e i n g l e s s i n t r u s i v e t h a n a f a c e - t o -f a c e i n t e r v i e w . D i s a d v a n t a g e s o f u s i n g a w r i t t e n q u e s t i o n n a i r e method a r e t h a t i t t a k e s l o n g e r t o r e c e i v e a r e s p o n s e , and t h a t t h e r e s p o n s e r a t e might be l o w e r t h a n i f p e r s o n a l i n t e r v i e w s were used. I n o r d e r t o c o n t r o l t h e e f f e c t s o f t h e s e two f a c t o r s , t h e t i m e l i m i t o f two weeks and t h e f o l l o w - u p l e t t e r a r e a p p l i e d . P r e - t e s t i n g t h e i n s t r u m e n t i n a p i l o t p r o j e c t a l s o h e l p e d reduce and e l i m i n a t e o f f e n s i v e q u e s t i o n s t h a t o t h e r w i s e would have s l o w e d o r impeded r e s p o n s e . T h i s p i l o t p r o j e c t i s o u t l i n e d i n Appendix B> i n c l u d i n g f i n d i n g s , d i s c u s s i o n , and m o d i f i c a t i o n s made t o t h e q u e s t i o n n a i r e . 108 5. THE MEASURE a) C o n s t r u c t i o n o f t h e Measure The i n s t r u m e n t i t s e l f was d i v i d e d i n t o f o u r s e c t i o n s , and f o r t h e most p a r t i n v o l v e s c l o s e d - e n d e d q u e s t i o n s w i t h n o m i n a l l e v e l r e s p o n s e s . The e n t i r e i n s t r u m e n t t a k e s no more t h a n t w e n t y m i n u t e s t o complete, and i s anonymous. I d e n t i f i c a t i o n numbers a r e o n l y p u t on t h e q u e s t i o n n a i r e a f t e r t h e y have been r e t u r n e d . S e c t i o n One: Death A n x i e t y The f i r s t s e c t i o n o f t h e q u e s t i o n n a i r e was a 1 5 - i t e m i n s t r u m e n t t h a t was d e s i g n e d t o measure t h e r e s p o n d e n t ' s a n x i e t y about d e a t h , and t h u s a d d r e s s e s t h e f i r s t f a c t o r o f t h e c o n c e p t u a l framework i d e n t i f i e d i n C h a p t e r Two. The Death A n x i e t y S c a l e (DAS) was d e v e l o p e d and t e s t e d by D.I. Templer (1969) . I t i n c l u d e s a br*oad range o f e q u a l l y w e i g h t e d q u e s t i o n s a d d r e s s i n g d e a t h , t h o u g h t s o f d e a t h , d i s e a s e and t i m e p e r s p e c t i v e ( M a r s h a l l , 1982). One advantage o f t h e DAS i s t h a t i t has been s t u d i e d and used e x t e n s i v e l y w i t h a v a r i e t y o f p o p u l a t i o n s i n c l u d i n g males, f e m a l e s , a d o l e s c e n t s and a d u l t s , p s y c h i a t r i c p a t i e n t s , and a number o f o c c u p a t i o n a l groups ( C o r c o r a n and F i s c h e r , 1987) . The norms t h a t a r e r e p o r t e d v a r y from 4.5 t o 7.0 w i t h DAS s c o r e s b e i n g h i g h e r f o r f e m a l e s and p s y c h i a t r i c , p a t i e n t s . I n terms o f s e n s i t i v i t y t o age d i f f e r e n c e s , t o t a l s c o r e t e n d s t o d e c r e a s e as t h e age o f t h e r e s p o n d e n t i n c r e a s e s , meaning a n x i e t y d e c r e a s e s . I n terms o f r e l i a b i l i t y , t h e Death A n x i e t y S c a l e i s r e p o r t e d t o have f a i r l y good i n t e r n a l c o n s i s t e n c y w i t h a K u d e r - R i c h a r d s o n f o r m u l a c o e f f i c i e n t o f .76 (C o r c o r a n and F i s c h e r , 1987) . "The DAS a l s o has good s t a b i l i t y w i t h a t h r e e week t e s t - r e t e s t c o r r e l a t i o n o f .83" (Co r c o r a n and F i s c h e r , 1987, p.141). The DAS has been r e p o r t e d t o have good c o n c u r r e n t v a l i d i t y , c o r r e l a t i n g .74 w i t h t h e F e a r o f Death S c a l e ( C o r c o r a n and F i s c h e r , 1987, p.141). " I t has a l s o d e m o n s t r a t e d good known-groups v a l i d i t y , d i s t i n g u i s h i n g s i g n i f i c a n t l y between a group o f p s y c h i a t r i c p a t i e n t s who v e r b a l i z e d h i g h d e a t h a n x i e t y and a c o n t r o l group" ( C o r c o r a n and F i s c h e r , 1987, p.141). M a r s h a l l (1982) r e p o r t s t h a t c o n s t r u c t v a l i d i t y has been p r o v i d e d i n t h e DAS by t h e f i n d i n g o f no c o r r e l a t i o n between t h e DAS and s e v e r a l measures o f r e l i g i o u s a f f i l i a t i o n , b e l i e f , and a c t i v i t y i n a sample o f c o l l e g e s t u d e n t s f o r whom r e l i g i o n was b e l i e v e d u n i m p o r t a n t . R e l i g i o u s s u b j e c t s had l o w e r DAS s c o r e s , s u g g e s t i n g t h a t r e l i g i o n p r o v i d e s a s o u r c e o f s u p p o r t a g a i n s t d e a t h a n x i e t y ( M a r s h a l l , 1982). I n terms o f c o n v e r g e n t v a l i d i t y , t h e DAS c o r r e l a t e d .74 w i t h t h e Boyer FODS i n a sample o f 77 u n d e r g r a d u a t e s . D i s c r i m i n a n t v a l i d i t y "means t h a t a c o n s t r u c t can be e m p i r i c a l l y d i f f e r e n t i a t e d from o t h e r c o n s t r u c t s " ( G r i n n e l l , 1988, p.118). Templer (1970) s u g g e s t s t h a t d e a t h a n x i e t y d i f f e r s from g e n e r a l a n x i e t y because o f moderate c o r r e l a t i o n s o f t h e DAS w i t h t h e Welsh 110 A n x i e t y S c a l e (.36), t h e A n x i e t y Index (no s i g n i f i c a n c e a t p<.05), t h e M a n i f e s t A n x i e t y S c a l e (.39) and an " e m o t i o n a l words" t e s t (.25) (Templer, 1970). F i n a l l y , Templer d e m o n s t r a t e d t h a t t h e r e i s not e x c e s s i v e i n t e r - i t e m redundancy i n terms o f f a c e v a l i d i t y ( M a r s h a l l , 1982). S e c t i o n Two: L i f e , Work, and E d u c a t i o n a l E x p e r i e n c e The second s e c t i o n o f t h e i n s t r u m e n t was g e a r e d t o e l i c i t i n f o r m a t i o n from t h e r e s p o n d e n t s on t h e i r l i f e , work and e d u c a t i o n a l e x p e r i e n c e w i t h d y i n g p a t i e n t s and t h e i r f a m i l i e s , and on t h e t y p e o f t r a i n i n g r e c e i v e d ( i e . f o r m a l o r i n f o r m a l ) . I t does not measure t h e d e p t h o f e x p e r i e n c e but s i m p l y t h e p o s s i b i l i t y o f e x p e r i e n c e . A l s o , t h e q u e s t i o n s c o n t a i n e d i n t h i s s e c t i o n were c o r r e l a t e d w i t h DAS. F o r example, t h e r e s p o n d e n t s a r e asked i f t h e y have e v e r e x p e r i e n c e d t h e d e a t h o f someone c l o s e t o them, i e . a f r i e n d o r r e l a t i v e . P a s t and p r e s e n t p r o f e s s i o n a l work e x p e r i e n c e w i t h d y i n g p a t i e n t s , and f o r m a l and i n f o r m a l e d u c a t i o n a l e x p e r i e n c e r e l a t e d t o d e a t h were i n v e s t i g a t e d . These a r e i n c l u d e d t o d i r e c t l y a d d r e s s t h e f a c t o r c o n c e r n i n g e d u c a t i o n and t r a i n i n g i d e n t i f i e d i n t h e l i t e r a t u r e r e v i e w . The f i n a l i s s u e a d d r e s s e d i n t h i s s e c t i o n i s competence and/or c o n f i d e n c e i n d e a l i n g w i t h t h e d y i n g t o p r o v i d e a s u b j e c t i v e measure o f where t h e r e s p o n d e n t b e l i e v e s he o r she a r e a t t h a t p o i n t i n t i m e i n terms o f w o r k i n g t h e r a p e u t i c a l l y w i t h d y i n g p a t i e n t s . I l l S e c t i o n Three: P e r c e p t i o n s o f P r a c t i c e The t h i r d s e c t i o n o f t h e q u e s t i o n n a i r e a d d r e s s e d s t a f f p e r c e p t i o n s o f p r o f e s s i o n a l and i n s t i t u t i o n a l p r a c t i c e s and p o l i c i e s r e l a t e d t o d y i n g i n t h e G e r i a t r i c D i v i s i o n . The q u e s t i o n s were d e r i v e d from t h e o p e r a t i o n a l d e f i n i t i o n o f p a l l i a t i v e c a r e , and c o v e r e d such p r a c t i c e s as m e e t i n g p h y s i c a l , e m o t i o n a l , and s p i r i t u a l needs o f t h e d y i n g i n d i v i d u a l ; needs o f t h e f a m i l y ; and s u p p o r t o f t h e c a r e g i v i n g s t a f f . A l s o , q u e s t i o n s d i r e c t e d a t i n s t i t u t i o n a l p r a c t i c e s s u ch as m e e t i n g t h e p r e s s u r e s o f t h e o r g a n i z a t i o n a l c o n t e x t , teamwork, r o l e e x p e c t a t i o n s , and exchange and communication o f d i a g n o s t i c i n f o r m a t i o n were c o n t a i n e d i n t h i s s e c t i o n . As w e l l , r e s p o n d e n t s c o u l d i n d i c a t e t h e a r e a s o f p r a c t i c e where need f o r change was recommended. F i n a l l y , t h e r e s p o n d e n t s were a s k e d t o comment i n an open-ended f a s h i o n , t h e i r g e n e r a l o p i n i o n about whether o r not a l l t h a t can be done f o r d y i n g p a t i e n t s i s b e i n g done, and t h e need f o r a s p e c i a l p a l l i a t i v e c a r e u n i t o r team. S e c t i o n F o u r : Demographics The f i n a l s e c t i o n was a demographic s e c t i o n t o p r o v i d e b a c k g r o u n d i n f o r m a t i o n about t h e r e s p o n d e n t s . T h i s s e c t i o n a s k e d f o r such i n f o r m a t i o n as sex, age, m a r i t a l s t a t u s , l e n g t h o f work e x p e r i e n c e a t R i v e r v i e w H o s p i t a l , s p e c i f i c l o c a t i o n where c u r r e n t l y work, and p r o f e s s i o n a l s t a t u s . T h i s d a t a was 112 u s e d f o r c o r r e l a t i o n s w i t h DAS t o s t u d y t h e e f f e c t o f t h e v a r i a b l e o f d e a t h a n x i e t y on p r a c t i c e , and t o o r g a n i z e r e s p o n d e n t s i n t o v a r i o u s c a t e g o r i e s . b) R e l i a b i l i t y and V a l i d i t y I t i s n e c e s s a r y i n any r e s e a r c h s t u d y t o d i s c u s s t h e v a l i d i t y and r e l i a b i l i t y o f t h e i n s t r u m e n t b e i n g used. The r e l i a b i l i t y and v a l i d i t y o f t h e Death A n x i e t y S c a l e (DAS) has p r e v i o u s l y been d i s c u s s e d (see pp.112-114). R e l i a b i l i t y and v a l i d i t y f o r s e c t i o n s 2, 3, and 4 o f t h e measure were not d e t e r m i n e d . 6. DATA ANALYSIS I n t h e a n a l y s i s o f d a t a c o l l e c t e d b o t h d e s c r i p t i v e and i n f e r e n t i a l s t a t i s t i c a l measurement were used. D e s c r i p t i v e s t a t i s t i c s p r o v i d e a means by which t h e sample d a t a can be o r g a n i z e d , summarized and i n t e r p r e t e d . I n f e r e n t i a l p r o c e d u r e s a l l o w e d t h e r e s e a r c h e r t o make g e n e r a l i z a t i o n s from t h e sample t o t h e p o p u l a t i o n from which t h e sample was drawn. The d a t a was a n a l y z e d u s i n g t h e S t a t i s t i c a l Package f o r t h e S o c i a l S c i e n c e s (SPSS:X). Responses were coded by number and e n t e r e d i n t o t h e computer. The d a t a f i r s t underwent a u n i v a r i a t e a n a l y s i s . The d a t a f o r each q u e s t i o n were r e p r e s e n t e d i n f r e q u e n c y t a b l e s 113 t h a t i n c l u d e d b o t h p e r c e n t a g e s and p r o p o r t i o n s . P e r c e n t a g e s a r e n e c e s s a r y f o r comparing t h e d i s t r i b u t i o n o f t h e v a r i a b l e s w i t h t h e d i f f e r e n t o c c u p a t i o n a l groups, p a r t i c u l a r l y s i n c e t h e groups were o f a d i f f e r e n t s i z e . The c e n t r a l t e n d e n c i e s o f t h e v a r i o u s c a t e g o r i e s o f d a t a can be r e p o r t e d . I n p a r t i c u l a r t h e DAS was s c o r e d by a s s i g n i n g a s c o r e o f one t o each i t e m c o r r e c t l y answered (1=T, 2=F, 3=F, 4=T, 5=F, 6=F, 7=F, 8-14=T, 15=F) and t h e n t o t a l l i n g a c r o s s i t e m s (Corcoran, and F i s h e r , 1987). T h e r e f o r e , t h e r e s u l t i n g i n d e x v a r i e s from 0 t h r o u g h 15. B i v a r i a t e a n a l y s i s was used t o measure l e v e l s o f a s s o c i a t i o n . Measures o f a s s o c i a t i o n d e s c r i b e t h e degree o f c o r r e l a t i o n between v a r i a b l e s . The purpose o f c r o s s -t a b u l a t i n g was t o d e t e r m i n e i f t h e r e was a p o t e n t i a l r e l a t i o n s h i p between v a r i a b l e s , and t h u s , t o t e s t h y p o t h e s e s . The s t a t i s t i c a l t e s t u sed f o r n o m i n a l d a t a was c h i square (X ). T h i s s t a t i s t i c a l c a l c u l a t i o n i s t h e d e t e r m i n a t i o n o f t h e d i f f e r e n c e between t h e o b s e r v e d f r e q u e n c i e s and t h e e x p e c t e d f r e q u e n c i e s . 7. ETHICAL ISSUES IN THE RESEARCH A l l U.B.C. r e s e a r c h p r o p o s a l s need a p p r o v a l from t h e E t h i c s Review B o a r d o f U.B.C. and t h e r e s e a r c h s i t e i n ac c o r d a n c e t o e t h i c a l s t a n d a r d s and p r o c e d u r e s . As t h i s 114 r e s e a r c h o n l y i n v o l v e d t h e s u r v e y o f p r o f e s s i o n a l s i n an i n s t i t u t i o n r a t h e r t h a n c l i e n t s and t h e i r f a m i l i e s , t h e number o f e t h i c a l i s s u e s were s i g n i f i c a n t l y r educed. Other i s s u e s t o c o n s i d e r were c o n f i d e n t i a l i t y and anonymity, v o l u n t a r y and i n f o r m e d c o n s e n t , r e g a r d f o r p r i v a c y , use and a c c e s s i b i l i t y t o d a t a , and l o s s o f p r o f e s s i o n a l s t a t u s . To ensure complete c o n f i d e n t i a l i t y and anonymity, t h e r e s p o n d e n t s were asked i n t h e c o v e r i n g l e t t e r (see Appendix D) not t o w r i t e t h e i r names anywhere on t h e q u e s t i o n n a i r e . As w e l l , t h e r e s p o n d e n t s were i n f o r m e d t h a t a l l p o t e n t i a l l y i d e n t i f y i n g i n f o r m a t i o n would be coded i n t o numbers. The c o v e r i n g l e t t e r a l s o i n c l u d e d a statement t h a t t h e r e s p o n d e n t s c o u l d withdraw from t h e s t u d y a t any t i m e and t h e y would not be p e n a l i z e d f o r d o i n g so. A promise was made t o t h e r e s p o n d e n t s t h a t no d e p r i v a t i o n i n p r o f e s s i o n a l s t a t u s would o c c u r as a r e s u l t o f t h e i r r e s p o n s e s . Informed consent i s i m p l i e d i f t h e q u e s t i o n n a i r e i s r e t u r n e d . The phone number and address o f t h e r e s e a r c h e r was p r o v i d e d i n case t h e r e were any q u e s t i o n s o r c o n c e r n s . There was no c o e r c i o n i n v o l v e d i n o b t a i n i n g r e s p o n d e n t s . Concern f o r t h e p r i v a c y and d i g n i t y o f t h e r e s p o n d e n t s i s more d i f f i c u l t t o a d d r e s s as t h e q u e s t i o n n a i r e c o n t a i n s v e r y p e r s o n a l and s e n s i t i v e m a t e r i a l . A g a i n , i f t h e r e s p o n d e n t s f e l t t h e need t o d e b r i e f from t h e e x p e r i e n c e o f c o m p l e t i n g t h e q u e s t i o n n a i r e t h e y c o u l d do so by c o n t a c t i n g t h e r e s e a r c h e r . 115 The r e s p o n d e n t s were t o l d i n t h e c o v e r i n g l e t t e r and i n t h e i n t r o d u c t i o n t o t h e q u e s t i o n n a i r e t h a t t h e y were not r e q u i r e d t o answer any q u e s t i o n s t h a t t h e y f e l t u n c o m f o r t a b l e w i t h . A c e r t a i n amount o f i n v a s i o n o f p r i v a c y i s u n a v o i d a b l e when one i s d e a l i n g w i t h such a s e n s i t i v e and p e r s o n a l i s s u e as d e a t h . Data were a c c e s s i b l e o n l y t o t h e r e s e a r c h e r and her s u p e r v i s o r , and o n l y f o r e d u c a t i o n a l p u r p o s e s . The raw d a t a was d e s t r o y e d a f t e r t h e c o m p l e t i o n o f t h e r e s e a r c h p r o j e c t . 8. PROBLEMS ENCOUNTERED IN THE RESEARCH There i s no r e s e a r c h p r o j e c t t h a t i s w i t h o u t i t s s h a r e of problems and t h i s was no e x c e p t i o n . There i s a p a r t i c u l a r dilemma i n d e s i g n i n g r e s e a r c h r e l a t e d t o i s s u e s o f d e a t h and d y i n g i n t h e o r g a n i z a t i o n a l c o n t e x t o f a h o s p i t a l i n s t i t u t i o n . O b v i o u s l y , when one i s p r o p o s i n g r e s e a r c h i n t h e a r e a o f de a t h and d y i n g , one has t o be s e n s i t i v e t o and c o g n i z a n t o f v a r i o u s p e r s o n a l and p r o f e s s i o n a l b e l i e f s , v a l u e s , e x p e c t a t i o n s , and d e c i s i o n - m a k i n g p r o c e s s e s r e g a r d i n g t h i s a r e a . One a l s o has t o be aware o f e t h i c a l c o n c e r n s when i n v o l v i n g t h e f a m i l y and most i m p o r t a n t l y t h e d y i n g i n d i v i d u a l s . I t was w i t h t h i s c o n s i d e r a t i o n t h a t t h e a u t h o r chose t o p r o c e e d w i t h a l e s s i n t e r f e r i n g d e s i g n and o n l y s u r v e y t h e p r o f e s s i o n a l s t a f f . T h i s d e s i g n would not t h r e a t e n t h e w e l l - b e i n g o f t h e c l i e n t i n any way. As w e l l , t h i s d e s i g n b e t t e r s u i t e d t h e purpose o f 116 t h e s t u d y , which a l s o i n c l u d e d p r o v i d i n g e d u c a t i o n and i n c r e a s i n g awareness f o r t h e c o n c e r n o f t h e w e l f a r e o f t h e d y i n g i n d i v i d u a l and h i s / h e r f a m i l y . B e f o r e g r a n t i n g a p p r o v a l t o do t h e r e s e a r c h , t h e S c i e n t i f i c Review Board of R i v e r v i e w H o s p i t a l had t o c a r e f u l l y a s s e s s t h e p r o f e s s i o n a l and p o l i t i c a l i m p l i c a t i o n s o f such a s t u d y , and d e t e r m i n e whether or not i t was i n t h e v e s t e d i n t e r e s t o f t h e H o s p i t a l t o have t h e r e s e a r c h conducted. T h i s c o n s i d e r a t i o n t o o k f i v e months t o complete, p a r t l y out o f r e s p e c t f o r t h e c o n t e n t i o u s h i s t o r y o f p a l l i a t i v e c a r e a t t h i s i n s t i t u t i o n . The second major problem e n c o u n t e r e d d u r i n g t h e r e s e a r c h was a s t r i k e by t h e p s y c h i a t r i c n u r s e s a t R i v e r v i e w H o s p i t a l . Because o f t h i s development, t h e Review Board d r a s t i c a l l y a l t e r e d t h e s a m p l i n g d e s i g n t o e x c l u d e n u r s e s and s i x o t h e r p r o f e s s i o n a l groups and t o i n c l u d e h e a l t h c a r e w o r k e r s . In e f f e c t , t h i s r e s u l t e d i n r e d u c i n g t h e power o f t h e s t u d y because i t would be i m p o s s i b l e t o get a complete p i c t u r e o f t h e c u r r e n t s i t u a t i o n r e g a r d i n g p r a c t i c e w i t h d y i n g i n d i v i d u a l s . A l s o , i t made t h e d a t a c o l l e c t i o n p r o c e d u r e more d i f f i c u l t t o a c c o m p l i s h , as h e a l t h c a r e workers a r e s u p e r v i s e d by t h e n u r s i n g a d m i n i s t r a t i o n . Once t h e s e i s s u e s were r e s o l v e d t h e p r o j e c t p roceeded w i t h o u t f u r t h e r problems b e i n g e n c o u n t e r e d . 9. SUMMARY In t h i s c h a p t e r t h e r e s e a r c h d e s i g n o f t h i s p r o j e c t was o u t l i n e d . S p e c i f i c a l l y , t h e l e v e l o f d e s i g n , c h o i c e of m e t h o d o l o g i c a l o r i e n t a t i o n , s a m p l i n g p r o c e d u r e , d a t a c o l l e c t i o n methods, d e s c r i p t i o n o f t h e measure, and e t h i c a l i s s u e s were d i s c u s s e d . As w e l l , t h e r a t i o n a l e f o r c h o o s i n g t h e d e s i g n was d i s c u s s e d f o r each a r e a , i n c l u d i n g t h e s t r e n g t h s and weaknesses. Chapter Four w i l l r e p o r t on t h e f i n d i n g s o f t h e r e s e a r c h p r o j e c t . CHAPTER FOUR R e s u l t s 1. INTRODUCTION O v e r a l l , t h e r e s u l t s i n d i c a t e t h a t t h i s s t u d y has been a u s e f u l e x e r c i s e t o come t o some u n d e r s t a n d i n g o f t h e p e r c e p t i o n s o f p a l l i a t i v e c a r e p r a c t i c e by h e a l t h c a r e p r o f e s s i o n a l s a t R i v e r v i e w H o s p i t a l . I t has i d e n t i f i e d key ar e a s o f p r a c t i c e t h a t a re done w e l l , and o t h e r s t h a t need t o be changed o r improved upon. I t has p r o v i d e d v a l u a b l e i n f o r m a t i o n t h a t t h e a d m i n i s t r a t i o n a t R i v e r v i e w H o s p i t a l can use as i t c o n t e m p l a t e s t h e b e s t approach t o t a k e i n c a r i n g f o r i t s d y i n g p a t i e n t s i n t h e G e r i a t r i c D i v i s i o n . T h e r e f o r e , i n t h e f o l l o w i n g c h a p t e r t h e r e s u l t s o f t h e c o r r e l a t i o n s o f t h e v a r i a b l e o f d e a t h a n x i e t y w i t h t h e v a r i o u s p e r s o n a l and p r o f e s s i o n a l v a r i a b l e s w i l l be p r e s e n t e d . As w e l l , a d e s c r i p t i o n o f s t a f f p e r c e p t i o n s s p e c i f i c t o p r a c t i c e s and p o l i c i e s r e g a r d i n g t h e d y i n g w i l l be e x p l a i n e d . 2. DEMOGRAPHIC DESCRIPTION OF RESPONDENTS The r e s u l t s o f t h e st u d y showed t h a t 23 out o f 58 q u e s t i o n n a i r e s were completed, f o r a r e t u r n r a t e o f 40%. T h i s i s c o n s i d e r e d t o be a f a i r l y r e a s o n a b l e r esponse r a t e i n 118 119 r e s e a r c h c i r c l e s . The f i n a l sample c o n s i s t e d o f s o c i a l w orkers (n=8) [SW] , h e a l t h c a r e workers (n=10) [HCW], g e n e r a l p h y s i c i a n s (n=2) [GP], p s y c h i a t r i s t s (n=2) [ P s y c h . ] , and p a s t o r a l , c a r e workers (n=l) [PCW]. The p e r c e n t a g e o f r e t u r n s a c c o r d i n g t o d i s c i p l i n e was s o c i a l workers (100%), h e a l t h c a r e workers ( 4 0 % ) , p h y s i c i a n s ( 2 0 % ) , p s y c h i a t r i s t s (20%) , and p a s t o r a l c a r e workers ( 2 0 % ) . Because o f t h e s m a l l sample s i z e , p a r t i c u l a r l y f o r each of t h e i n d i v i d u a l p r o f e s s i o n s , t h e f i n d i n g s d i s c u s s e d i n t h i s c h a p t e r must be i n t e r p r e t e d w i t h c a u t i o n . The p e r c e n t a g e s p r e s e n t e d i n t h i s c h a p t e r w i l l a l s o be v a l i d p e r c e n t a g e s , meaning p e r c e n t a g e s not i n c l u d i n g m i s s i n g c a s e s . In o t h e r words, t h e v a l i d p e r c e n t a g e i s t h e p e r c e n t a g e g i v e n f o r a l l who answered t h e q u e s t i o n . The demographic breakdown was 16 (70%) o f t h e r e s p o n d e n t s were femal e , and 7 (30%) were male. In terms o f age, h a l f o f t h e sample was below t h e age o f 40, and t h e o t h e r h a l f was 40 or o l d e r . /About t w o - t h i r d s o f t h e sample were m a r r i e d , and t h e r e s t were s i n g l e , s e p a r a t e d o r d i v o r c e d . Of t h e r e s p o n d e n t s , f i v e (23%) had worked l e s s t h a n two y e a r s a t R i v e r v i e w H o s p i t a l , e i g h t o r 35% had worked between two and f i v e y e a r s , two (9.0%) had worked between t e n and f i f t e e n y e a r s , and seven (32%) had worked over f i f t e e n y e a r s . The median f o r l e n g t h o f work at R i v e r v i e w H o s p i t a l was g r e a t e r t h a n two y e a r s and l e s s t h a n f i v e . The s h o r t e s t someone had worked was t h r e e months and t h e l o n g e s t was twenty y e a r s . Of 120 t h e g e n e r a l p h y s i c i a n s , p s y c h i a t r i s t s and p a s t o r a l c a r e worker, a l l had worked a t R i v e r v i e w f o r l e s s t h a n f i v e y e a r s . In c o n t r a s t , t h e s o c i a l workers and h e a l t h c a r e workers i n t h e sample had more e x p e r i e n c e a t R i v e r v i e w H o s p i t a l . 3. SECTION ONE: DEATH ANXIETY SCALE (DAS) T h i s s e c t i o n i s i n c l u d e d i n t h e q u e s t i o n n a i r e t o address t h e f i r s t v a r i a b l e o f t h e c o n c e p t u a l framework, namely, p e r s o n a l a n x i e t y o f d e a t h . As w e l l , t h e p o s s i b l e c o r r e l a t e s o f d e a t h a n x i e t y w i l l be d i s c u s s e d i n terms o f t h e f i n d i n g s a c h i e v e d . a) O v e r a l l DAS Scores The o v e r a l l mean o f t h e Death A n x i e t y S c a l e , t h e a r i t h m e t i c average, i s 6.35 w i t h a s t a n d a r d d e v i a t i o n o f 3.17. The mean f a l l s w i t h i n t h e norm t h a t Templer (1969) e s t a b l i s h e d f o r t h e s c a l e , which i s 4.5 t o 7.0. K u r t o s i s i s .246 which means t h a t t h e d i s t r i b u t i o n i s skewed t o t h e r i g h t o r toward l a r g e r numbers. The d i s t r i b u t i o n i s f a i r l y normal, and t h e f l u c t u a t i o n about z e r o c o u l d have been r e s u l t e d from s a m p l i n g v a r i a t i o n . T h e r e f o r e , on t h e average, R i v e r v i e w s t a f f i n t h i s s t u d y was found t o have e x p e c t e d o r normal l e v e l s o f de a t h a n x i e t y . 121 b) DAS by P r o f e s s i o n F o r t h i s sample t h e p r o f e s s i o n s can be c a t e g o r i z e d from l e a s t a n x i o u s t o most a n x i o u s i n t h i s o r d e r : X 1) g e n e r a l p h y s i c i a n s 3.0 2) s o c i a l w orkers 5.5 3) h e a l t h c a r e workers 6.8 4) p s y c h i a t r i s t s 8.5 5) p a s t o r a l c a r e worker A g a i n i t must be n o t e d , t h a t due t o t h e s m a l l sample t h i s f i n d i n g must be i n t e r p r e t e d w i t h c a u t i o n . Of i n t e r e s t , t h e s o c i a l work group have t h e w i d e s t range o f s c o r e s g o i n g from 1 t o 14, w i t h a mean o f 5.5. As a group t h e y were a l l w i t h i n o r below t h e norm e x c e p t f o r one r e s p o n d e n t . The s c o r e f o r t h e p a s t o r a l c a r e worker has been w i t h h e l d t o m a i n t a i n c o n f i d e n t i a l i t y . c) DAS by Gender I t was p r e d i c t e d t h a t d e a t h a n x i e t y w i l l be a s s o c i a t e d w i t h r e s p o n d e n t ' s gender. R e s u l t s i n d i c a t e d , however, no s i g n i f i c a n t c o r r e l a t i o n between t h e v a r i a b l e s . O v e r a l l t h e mean f o r t h e female r e s p o n d e n t s (6.44) i s s l i g h t l y h i g h e r t h a n f o r t h e male r e s p o n d e n t s (6.14). Two o f t h e seven males were above t h e norm as oppos'ed t o 6 o f t h e 16 female r e s p o n d e n t s . The range f o r t h e male r e s p o n d e n t s was a l s o n a r r o w e r t h a n f o r 122 t h e f e m a l e s . S p e c i f i c a l l y f o r t h e s o c i a l work sample, t h e female r e s p o n d e n t s have a h i g h e r mean a t 5.8 t h a n t h e male r e s p o n d e n t s a t 5.0. d) DAS by Age The DAS s c o r e s can a l s o be r e p o r t e d i n terms o f t h e ages o f t h e v a r i o u s p r o f e s s i o n a l s . The h y p o t h e s i s i s t h a t d e a t h a n x i e t y w i l l d e c r e a s e as age i n c r e a s e s . O v e r a l l t h e r e s u l t s showed t h a t DAS s c o r e s were not s i g n i f i c a n t l y c o r r e l a t e d w i t h age f o r t h i s sample. I n t e r e s t i n g l y though, t h o s e who s c o r e d above t h e norm and were 4 0 o r o l d e r were a l l f e m a l e . e) DAS by M a r i t a l S t a t u s The p r e d i c t i o n made c o n c e r n i n g DAS and m a r i t a l s t a t u s was t h a t d e a t h a n x i e t y w i l l be h i g h e r f o r m a r r i e d p e o p l e t h a n f o r s i n g l e p e o p l e . However, a l t h o u g h a s t a t i s t i c a l l y s i g n i f i c a n t c o r r e l a t i o n was not found (r=.33 p=.07), t h e t r e n d f o r t h e DAS s c o r e s showed t h a t t h e s i n g l e r e s p o n d e n t s t e n d e d t o have h i g h e r s c o r e s t h a n t h o s e who were m a r r i e d . The two r e s p o n d e n t s who were s e p a r a t e d and d i v o r c e d s c o r e d even l o w e r . W i t h i n t h e s o c i a l work sample t h e mean f o r s i n g l e r e s p o n d e n t s was 6.0, m a r r i e d 5.5, and d i v o r c e d 5.0. f) DAS by L e n g t h o f Work E x p e r i e n c e The f i n a l c o r r e l a t e f o r t h e DAS s c o r e s i s l e n g t h o f work 123 e x p e r i e n c e a t R i v e r v i e w H o s p i t a l . I t was p r e d i c t e d t h a t d e a t h a n x i e t y w i l l i n v e r s e l y v a r y w i t h l e n g t h o f e x p e r i e n c e w o r k i n g a t R i v e r v i e w H o s p i t a l . The r e s p o n d e n t s who worked under two y e a r s and o v e r f i f t e e n y e a r s have t h e h i g h e s t means a t 7.4 and 7.6 r e s p e c t i v e l y , w h i c h a r e b o t h o v e r t h e e s t a b l i s h e d norm. O t h e r w i s e t h e t r e n d ( K e n d a l l ' s Tau i s -.321, p=.034) i s t h a t DAS i n c r e a s e s w i t h l e n g t h o f e x p e r i e n c e . The group o f r e s p o n d e n t s who had worked f o r two t o f i v e y e a r s a t R i v e r v i e w H o s p i t a l had t h e l o w e s t mean e q u a l t o t h e minimum v a l u e o f t h e norm (4.5) . 4. SECTION TWO: L I F E , WORK, and EDUCATIONAL EXPERIENCE In t h i s s e c t i o n , t h e c o r r e l a t e s o f DAS, namely e x p e r i e n c e of d e a t h o f a s i g n i f i c a n t o t h e r , p a s t and p r e s e n t work e x p e r i e n c e w i t h t h e d y i n g and t h e i r f a m i l i e s , e d u c a t i o n and t r a i n i n g , and f e e l i n g s o f competence and/or c o n f i d e n c e when w o r k i n g w i t h t h e d y i n g , a r e a d d r e s s e d . The q u e s t i o n s c o n c e r n i n g e d u c a t i o n and t r a i n i n g a l s o p r o v i d e d e s c r i p t i v e i n f o r m a t i o n t o a d d r e s s t h e e d u c a t i o n and t r a i n i n g f a c t o r o f t h e c o n c e p t u a l framework. a) Death o f Someone C l o s e I t was p r e d i c t e d t h a t d e a t h a n x i e t y w i l l v a r y i n v e r s e l y w i t h p e r s o n a l e x p e r i e n c e o f d e a t h o f a s i g n i f i c a n t o t h e r . 124 Death o f a s i g n i f i c a n t o t h e r , i e . , a r e l a t i v e o r f r i e n d , was r e p o r t e d by a m a j o r i t y (96%) o f t h e r e s p o n d e n t s . Those who resp o n d e d t h a t t h e y had e x p e r i e n c e d a d e a t h s c o r e d on t h e DAS a c r o s s t h e range o f p o s s i b l e s c o r e s . T h e r e f o r e , no t r e n d s i n terms o f e x p e r i e n c i n g t h e d e a t h o f someone c l o s e and s c o r e on d e a t h a n x i e t y were found. We cannot know w i t h any c e r t a i n t y what e f f e c t d e a t h may have had on t h e p e r s o n a l a n x i e t y o f t h e r e s p o n d e n t . b) Work W i t h D y i n g P a t i e n t s as a Stu d e n t S t u d e n t e x p e r i e n c e w i t h d y i n g p a t i e n t s was r e p o r t e d by about t w o - t h i r d s o f t h e r e s p o n d e n t s (60.9%) . The mean f o r t h e r e s p o n d e n t s who had worked w i t h d y i n g p a t i e n t s as a s t u d e n t (5.86), was l o w e r t h a n f o r t h o s e who had not ( 6 . 6 ) , w h i c h i s a m a r g i n a l d i f f e r e n c e . The p r e d i c t i o n t h a t work as a s t u d e n t would d e c r e a s e DAS was, t h e r e f o r e , n o t s t a t i s t i c a l l y s u p p o r t e d . I n t e r e s t i n g l y , however, t h e s o c i a l w o r k e r s who responded a f f i r m a t i v e l y had a mean o f 4.0 as opposed t o 7.0. c) Work W i t h D y i n g P a t i e n t s as a P r o f e s s i o n a l The m a j o r i t y o f r e s p o n d e n t s (87%) r e p o r t e d t h a t t h e y had worked w i t h d y i n g p a t i e n t s and t h e i r f a m i l i e s as p r o f e s s i o n a l s . I t was p r e d i c t e d t h a t DAS would v a r y i n v e r s e l y w i t h e x p e r i e n c e o f w o r k i n g w i t h t h e d y i n g and t h e i r f a m i l i e s as a p r o f e s s i o n a l . Those who had worked p r o f e s s i o n a l l y had a 125 DAS mean o f 6.3. Those who had not s c o r e d a mean o f 7.0. The number o f r e s p o n d e n t s who have not worked w i t h d y i n g p a t i e n t s i s t o o low t o su g g e s t a t r u e p r e d i c t i o n . d) C u r r e n t l y Working W i t h D y i n g P a t i e n t s I t was p r e d i c t e d t h a t t h o s e who were c u r r e n t l y w o r k i n g w i t h d y i n g p a t i e n t s and t h e i r f a m i l i e s would have h i g h e r d e a t h a n x i e t y t h a n t h o s e who were n o t . The o v e r a l l DAS mean f o r t h o s e w o r k i n g w i t h d y i n g p a t i e n t s (6.1) was l o w e r t h a n t h o s e who were not (6.6) but t h e d i f f e r e n c e i s not s i g n i f i c a n t . A t t h e t i m e o f c o m p l e t i o n o f t h e q u e s t i o n n a i r e , o n l y t e n (45.5%) r e s p o n d e n t s were w o r k i n g w i t h d y i n g p a t i e n t s . A n o t h e r n i n e (40.9%) were n o t , two (9.1%) were u n s u r e , and one (4.5%) answered t h a t i t was not a p p l i c a b l e . Of i n t e r e s t , t h e mean f o r t h e s o c i a l workers who were w o r k i n g w i t h d y i n g p a t i e n t s was 2.0 compared t o 8.0 f o r t h o s e who were n o t . e) F o r m a l E d u c a t i o n E x p e r i e n c e I n terms o f e d u c a t i o n a l e x p e r i e n c e , h a l f (52%) o f t h e r e s p o n d e n t s had some form o f f o r m a l e d u c a t i o n o r i n s t r u c t i o n on t h e s u b j e c t o f d e a t h and d y i n g . I t was p r e d i c t e d t h a t d e a t h a n x i e t y w i l l v a r y i n v e r s e l y w i t h e d u c a t i o n a l e x p e r i e n c e and t r a i n i n g i n w o r k i n g w i t h t h e d y i n g and t h e i r f a m i l i e s . No s i g n i f i c a n t c o r r e l a t i o n was found. 126 f ) I n f o r m a l E d u c a t i o n E x p e r i e n c e The n e x t i s s u e a d d r e s s e s t h e i s s u e o f i n f o r m a l e d u c a t i o n on t h e s u b j e c t o f d e a t h and d y i n g , such as i n - s e r v i c e s , t r a i n i n g workshops, o r c o n f e r e n c e s . Only 9 o f t h e 23 (39%) r e s p o n d e n t s had a t t e n d e d such e v e n t s . Over h a l f o f t h e t o t a l sample had n o t , and one respondent t h o u g h t i t n ot a p p l i c a b l e . I n t e r e s t i n a t t e n d i n g t h e s e i n f o r m a l e d u c a t i o n e v e n t s t e n d e d t o be h i g h e s t w i t h t h e s o c i a l work sample and t h e p a s t o r a l c a r e worker. Over 62% o f t h e s o c i a l workers had a t t e n d e d , and th e p a s t o r a l c a r e worker a l s o responded p o s i t i v e l y . The g e n e r a l p h y s i c i a n s were d i v i d e d i n t h e i r answers, and b o t h p s y c h i a t r i s t s had not a t t e n d e d any t r a i n i n g programs. As w e l l , o n l y 20% o f t h e h e a l t h c a r e w o r k e r s had a t t e n d e d , 70% had n o t , and 10% t h o u g h t i t not a p p l i c a b l e . I t was p r e d i c t e d t h a t d e a t h a n x i e t y w i l l v a r y i n v e r s e l y w i t h i n f o r m a l e d u c a t i o n and t r a i n i n g i n w o r k i n g w i t h t h e d y i n g and t h e i r f a m i l i e s . I n t e r e s t i n g l y , f o r t h e t o t a l sample o f t h o s e who had a t t e n d e d i n f o r m a l t r a i n i n g t h e mean DAS was v e r y low, i n f a c t , below t h e norm. The r e s p o n d e n t s who had not a t t e n d e d a c t u a l l y had a mean DAS above t h e norm a t 7.46, and a l s o t h e re s p o n d e n t who f e l t i t was not a p p l i c a b l e had a h i g h e r s c o r e . T h e r e f o r e , t h e p r e d i c t i o n i s s u p p o r t e d (X a =38, df=18 p>.001). T h i s t r e n d i s c o n t i n u e d when we l o o k a t t h e DAS means c o r r e l a t e d wi'th t h e r e s p o n s e s t o t h i s q u e s t i o n f o r each i n d i v i d u a l p r o f e s s i o n . 127 g) Competence and/or C o n f i d e n c e i n Work W i t h D y i n g P a t i e n t s H a l f o f t h e r e s p o n d e n t s f e l t competent and/or c o n f i d e n t i n w o r k i n g w i t h d y i n g p e o p l e and t h e i r f a m i l i e s . A n o t h e r 17% responded n e g a t i v e l y t o t h i s i s s u e , and a n o t h e r 30% were "unsure". The groups t h a t were p o s i t i v e about t h e i r competence and/or c o n f i d e n c e were t h e g e n e r a l p h y s i c i a n s and p a s t o r a l c a r e worker. The p s y c h i a t r i s t s were l e s s s u r e w i t h one r e s p o n d i n g n e g a t i v e l y , and t h e o t h e r u n s u r e . F i v e h e a l t h c a r e w o r k e r s f e l t p o s i t i v e l y , one d i d n o t , and f o u r were u n s u r e . S i m i l a r l y , h a l f o f t h e s o c i a l work sample f e l t c o n f i d e n t and/or competent, 2 were n o t , and a n o t h e r 2 were u n s u r e . I t was p r e d i c t e d t h a t d e a t h a n x i e t y w i l l v a r y i n v e r s e l y w i t h f e e l i n g o f competence and/or c o n f i d e n c e i n w o r k i n g w i t h d y i n g p e o p l e and t h e i r f a m i l i e s . R e l a t e d t o t h e DAS, t h o s e r e s p o n d e n t s who f e l t p o s i t i v e about t h i s q u e s t i o n had a mean of 5.58, t h o s e who were not had a mean o f 6.5, and t h o s e unsure s c o r e d 7.57. T h e r e f o r e , t h e r e i s a t r e n d t h a t s u p p o r t s t h e p r e d i c t i o n , a l t h o u g h i t i s m a r g i n a l l y s i g n i f i c a n t . T h i s t r e n d was not c o n s i s t e n t when t h e a n a l y s i s was done f o r i n d i v i d u a l p r o f e s s i o n a l groups. 128 5. SECTION THREE: PERCEPTION OF PRACTICE I n t h i s s e c t i o n t h e r e s p o n d e n t s were a s k e d q u e s t i o n s p e r t a i n i n g t o t h e i r p e r c e p t i o n o f p a l l i a t i v e c a r e p r a c t i c e and p o l i c i e s o f t h e G e r i a t r i c D i v i s i o n . The q u e s t i o n s were d e r i v e d from t h e o p e r a t i o n a l d e f i n i t i o n o f t h e c o n c e p t o f p a l l i a t i v e c a r e and can be c a t e g o r i z e d a c c o r d i n g t o t h e r e m a i n i n g f a c t o r s o f t h e c o n c e p t u a l framework d e s c r i b e d i n C h a p t e r Two. The f a c t o r s a d d r e s s e d i n t h i s s e c t i o n i n c l u d e d t h e o r g a n i z a t i o n a l i s s u e s o f t h e h o s p i t a l , p r o f e s s i o n a l r o l e e x p e c t a t i o n s , i s s u e s o f teamwork, and communication of d i a g n o s t i c i n f o r m a t i o n . The q u e s t i o n s c o n t a i n e d i n t h i s s e c t i o n can t h u s be grouped a c c o r d i n g t o t h e s e f o u r v a r i a b l e s o u t l i n e d t h a t can a f f e c t t h e t h e r a p e u t i c c a r e o f t h e d y i n g and t h e i r f a m i l i e s . The f i n d i n g s w i l l be p r e s e n t e d as t h e y p e r t a i n t o t h e s e v a r i a b l e s . a) O r g a n i z a t i o n a l S t r u c t u r e o f t h e H o s p i t a l System The i s s u e o f t h e o r g a n i z a t i o n o f t h e h o s p i t a l system and i t s i n h e r e n t p r e s s u r e s was b r o k e n down i n t o d i s t i n c t q u e s t i o n s t o measure whether o r not t h e o r g a n i z a t i o n was a b l e t o meet t h e i d e n t i f i e d needs of t h e d y i n g p a t i e n t , f a m i l y , and c a r e g i v e r s , and where need f o r change i s i n d i c a t e d . I n terms o f p h y s i c a l needs o f t h e d y i n g p a t i e n t b e i n g met ( i e . p a i n c o n t r o l and symptom r e l i e f ) , 17 or 81% o f t h e r e s p o n d e n t s 129 answered t h a t t h i s need was b e i n g met. The r e m a i n i n g 4 o r 19% of r e s p o n d e n t s f e l t t h a t i t depended, e s p e c i a l l y on t h e d o c t o r i n v o l v e d . When a s k e d i f t h e r e was a need f o r change 4 (31%) r e s p o n d e n t s f e l t t h e r e was, 6 o r (46%) answered "no", and 3 (23%) were u n s u r e . When a s k e d i f t h e e m o t i o n a l needs o f t h e d y i n g p a t i e n t were b e i n g met 6 (30%) answered "yes", 7 (35%) answered "no", and a n o t h e r 7 (35%) answered "depends". E m o t i o n a l needs were d e s c r i b e d as need t o e x p r e s s g r i e f and l o s s , and u n d e r s t a n d i n g meaning o f t h e i r l i f e and d e a t h . Those who responded t h a t i t "depends" commented t h a t i t was dependent on t h e s t a f f i n v o l v e d and how c o m f o r t a b l e t h e y f e e l w i t h t h e i s s u e , as w e l l as on t h e "mental a b i l i t y " o f t h e p a t i e n t . There was a c l e a r message f o r need f o r change as 10 o f t h e 14 who answered responded w i t h a "yes". The g e n e r a l p h y s i c i a n s , p s y c h i a t r i s t , and s o c i a l w o r k ers who responded t h o u g h t change i n m e e t i n g t h i s need was n e c e s s a r y . S p i r i t u a l needs a r e t h o s e t h a t d e a l w i t h t h e p e r s o n ' s r e l a t i o n s h i p w i t h God, however d e f i n e d by t h e i n d i v i d u a l . Over h a l f o f t h o s e who answered a g r e e d t h a t t h i s need was b e i n g met. Four (23.5%) d i d not t h i n k s p i r i t u a l needs were b e i n g met, and a n o t h e r f o u r (23.5%) t h o u g h t i t depended. The l a t t e r r e s p o n d e n t s commented t h a t i t depended on whether t h e d y i n g p e r s o n made a r e q u e s t f o r s p i r i t u a l c o m f o r t , and on p a s t o r a l c a r e s e r v i c e s . R e g a r d l e s s o f t h e number o f 130 r e s p o n d e n t s who t h o u g h t s p i r i t u a l needs were b e i n g met, 41.7% s t i l l t h o u g h t t h e r e was a need f o r change. The n e x t o r g a n i z a t i o n a l c o n c e r n r e l a t e d t o t h e needs o f t h e c a r e - g i v i n g p r o f e s s i o n a l s . Can t h e c a r e g i v e r s meet t h e i r need t o e x p r e s s t h e i r own g r i e f and l o s s from t h e d e a t h o f a p a t i e n t , and can t h e y get r e l i e f from t h e i r burden? Over h a l f (58%) o f t h e r e s p o n d e n t s s t a t e d t h a t t h i s need was not b e i n g met. One s o c i a l worker commented, " I don't t h i n k we l o o k a f t e r one a n o t h e r i n t h e way we s h o u l d . I t ' s one o f t h o s e "weaknesses" among me n t a l h e a l t h p r o f e s s i o n a l s " . I n f a c t , 6 out o f 8 s o c i a l work r e s p o n d e n t s d i d not f e e l t h i s need was b e i n g met, as w e l l as one p s y c h i a t r i s t and 4 h e a l t h c a r e w o r k e r s . Indeed, 62.5% o f t h e r e s p o n d e n t s a g r e e d t h a t t h e r e was a need f o r change i n t h i s a r e a . P a l l i a t i v e c a r e must a l s o n e c e s s a r i l y meet t h e needs o f t h e f a m i l y o f t h e d y i n g p a t i e n t , i e . , p r o v i d i n g e m o t i o n a l s u p p o r t and h e l p w i t h i n t h e b u r e a u c r a t i c h o s p i t a l e n v i r o n m e n t , as t h e y a r e i n c l u d e d i n t h e u n i t o f c a r e . I n terms o f t h e R i v e r v i e w H o s p i t a l o r g a n i z a t i o n m e e t i n g t h e needs of t h e f a m i l y , 47% t h o u g h t t h e needs of t h e f a m i l i e s were b e i n g met, 35% d i d not t h i n k so, and 18% t h o u g h t i t depended. One s o c i a l w orker o f f e r e d t h a t m e e t i n g t h e s e needs depended on t h e s t a f f i n v o l v e d and how s e n s i t i v e p a r t i c u l a r members o f t h e s t a f f a r e t o t h i s s i t u a t i o n . As w e l l , a n o t h e r s o c i a l worker commented t h a t i t depended on t h e a c t u a l a v a i l a b i l i t y o f t h e f a m i l y . An 131 overwhelming 69% o f t h e r e s p o n d e n t s f e l t t h a t t h e r e was a need f o r change i n t h i s p r a c t i c e . A n o t h e r i s s u e i s t h e a v a i l a b i l i t y o f s u p p o r t f o r t h e c a r e - g i v i n g p r o f e s s i o n a l s and o t h e r s w o r k i n g w i t h d y i n g p a t i e n t s , s uch as c o u n s e l l i n g s e r v i c e s w i t h i n t h e o r g a n i z a t i o n a l s t r u c t u r e . A p p r o x i m a t e l y t h r e e - q u a r t e r (72%) o f t h e r e s p o n d e n t s d i d n ot t h i n k t h a t t h i s t y p e o f s u p p o r t was a v a i l a b l e , o r i f i t was a v a i l a b l e d i d not know o f i t s e x i s t e n c e . Only 11% tho u g h t t h a t s u p p o r t was a v a i l a b l e , t o some e x t e n t t h r o u g h p a s t o r a l c a r e s e r v i c e s . When asked i f t h e r e was a need f o r change i n t h i s a r e a , 92% t h o u g h t " y e s " . The l a s t q u e s t i o n t h a t p e r t a i n s t o i s s u e s o f t h e o r g a n i z a t i o n a l s t r u c t u r e o f t h e h o s p i t a l c o n c e r n e d t h e a b i l i t y t o work " p s y c h o l o g i c a l l y " w i t h t h e d y i n g p a t i e n t c o n s i d e r i n g t h e work r o u t i n e o f t h e r e s p o n d e n t . One t h i r d (32%) o f t h e r e s p o n d e n t s f e l t t h a t t h e i r work r o u t i n e d i d a l l o w them t o work " p s y c h o l o g i c a l l y " w i t h t h e d y i n g p a t i e n t , 42% d i d n o t , and 2 6% t h o u g h t t h a t i t depended. A g e n e r a l p h y s i c i a n f e l t t h a t t h i s work c o u l d o n l y be done " w i t h i n t h e l i m i t s o f t h e me n t a l s t a t e o f t h e p a t i e n t " . A h e a l t h c a r e worker s u g g e s t e d t h a t t h e i r a b i l i t y t o do t h i s depended on "which t y p e o f ward" t h e y were w o r k i n g on a t t h e t i m e . A s o c i a l worker made t h e o b s e r v a t i o n t h a t "sometimes numbers a r e more i m p o r t a n t t h a n " q u a l i t y " t i m e " . Both' g e n e r a l p h y s i c i a n s and t h e p a s t o r a l c a r e worker a g r e e d t h a t t h e y c o u l d a c c o m p l i s h " p s y c h o l o g i c a l " 132 c a r e o f t h e d y i n g p a t i e n t w i t h i n t h e i r work r o u t i n e . The h e a l t h c a r e w o r k e r s and p s y c h i a t r i s t s f e l t t h a t t h e i r work r o u t i n e would not a l l o w f o r i t . S o c i a l w o r k e r s were d i v i d e d on t h e i s s u e . b) R o l e E x p e c t a t i o n s o f P r o f e s s i o n a l s The second i s s u e a d d r e s s e d i n t h i s s e c t i o n i s t h e r o l e e x p e c t a t i o n s o f t h e p r o f e s s i o n a l s . A m a j o r i t y o f r e s p o n d e n t s ( 6 0 % ) , a g r e e d t h a t t h e i r r o l e was s t e r e o t y p e d by o t h e r s . H e a l t h c a r e w o r k e r s , e s p e c i a l l y , f e l t t h a t t h e i r r o l e was s t e r e o t y p e d by o t h e r s . Yet t h e r e was not an overwhelming p e r c e p t i o n f o r t h e need f o r change i n t h i s a r e a . Only 4 6% o f t h e r e s p o n d e n t s t h o u g h t t h e r e was a need f o r change, and t h i s group was o n l y made up o f s o c i a l w o r k e r s and h e a l t h c a r e w o r k e r s . The r e s t o f t h e p r o f e s s i o n s d i d not r e a l l y t h i n k t h e r e was a need f o r change. The o t h e r q u e s t i o n p e r t a i n i n g t o r o l e a s k e d t h e r e s p o n d e n t s i f t h e i r p r o f e s s i o n a l r o l e l i m i t e d t h e p r o v i s i o n o f t h e r a p e u t i c c a r e t o t h e d y i n g p a t i e n t . A g a i n , s o c i a l w o r k e rs and h e a l t h c a r e workers c o m p r i s e d t h e 33% o f t h e r e s p o n d e n t s who answered p o s i t i v e l y . The g e n e r a l p h y s i c i a n , p s y c h i a t r i s t , and p a s t o r a l c a r e worker d i d not t h i n k t h a t t h e i r r o l e l i m i t e d t h e i r a b i l i t y . I n t e r e s t i n g l y , t h e s o c i a l work r e s p o n d e n t s s a i d t h a t t h e r e was a need f o r change w h i l e t h e h e a l t h c a r e workers d i d n o t . The g e n e r a l p h y s i c i a n s d i d 133 not t h i n k t h e r e was a need f o r change i n t h i s a r e a , and a l l o t h e r answered t h a t i t depended. c) Teamwork Amongst P r o f e s s i o n a l s A team approach t o t h e r a p e u t i c t r e a t m e n t o f p a t i e n t s i s s a i d t o be t a k e n a t R i v e r v i e w H o s p i t a l . The f i n d i n g s from t h i s s t u d y a l s o s u g g e s t t h a t t h e r e i s teamwork amongst t h e v a r i o u s p r o f e s s i o n a l s t a f f . A m a j o r i t y (81%) o f t h e r e s p o n d e n t s a g r e e d t h a t t h e r e was teamwork. Only one re s p o n d e n t d i d not agree, and t h a t p e r s o n was a s o c i a l worker. A n o t h e r s o c i a l worker and h e a l t h c a r e worker t h o u g h t t h a t i t depended, and q u a l i f i e d t h a t by i n d i c a t i n g t h a t t h e y were o p e r a t i n g under a m e d i c a l model w h i c h r e s t r i c t s team f u n c t i o n i n g . The m a j o r i t y o f t h e r e s p o n d e n t s d i d not f e e l t h a t t h e r e was a need f o r change i n t h i s a r e a . Only two s o c i a l w o r k e r s s t a t e d t h a t change was n e c e s s a r y . A d i f f e r e n t p i c t u r e a p p e a r s , however, when t h e r e s p o n d e n t s were a s k e d whether o r not t h e y p e r s o n a l l y worked as a member o f a team when w o r k i n g w i t h t h e d y i n g . T h i s t i m e 70% s a i d t h e y worked as a member o f a team, and 30% s a i d t h e y d i d n o t . I t would appear from t h e s e r e s u l t s t h a t t h e p r o f e s s i o n a l s r e c o g n i z e d t h e p r e s e n c e o f teams b u t d i d not work as a team w i t h d y i n g p a t i e n t s . P e r h a p s , a l s o , t h i s r e s u l t i n d i c a t e s t h a t t h e r e i s no s h a r e d model o f how a team would c o l l a b o r a t e when i t comes t o d e a t h i s s u e s . A g a i n , 134 s o c i a l w o r k e r s and h e a l t h c a r e w o r kers s t a t e d t h a t t h e r e was a need f o r change. d) Exchange and Communication o f D i a g n o s t i c I n f o r m a t i o n The f i n a l i s s u e e x p l o r e d i n t h i s s t u d y was t h e i s s u e o f c o n v e y i n g and e x c h a n g i n g d i a g n o s t i c i n f o r m a t i o n . Four q u e s t i o n s c o n t a i n e d i n t h e s u r v e y a d d r e s s e d t h i s i s s u e . The f i r s t a s k e d i f , i n most c a s e s , t h e p a t i e n t was made aware t h a t she/he were d y i n g . Only 22% o f t h e r e s p o n d e n t s s a i d t h a t t h e p a t i e n t was made aware. F o u r t y - f o u r p e r c e n t d i d not agree t h a t t h e p a t i e n t was t o l d about impending d e a t h . F i v e out o f e i g h t h e a l t h c a r e w o r kers responded t h i s way. A n o t h e r 33% th o u g h t t h a t t h e p a t i e n t was t o l d o n l y under c e r t a i n c o n d i t i o n s , depending on f a c t o r s such as t h e i r l e v e l o f u n d e r s t a n d i n g o r m e n t a l and e m o t i o n a l s t a b i l i t y . I n t e r e s t i n g l y , no one respondent s t a t e d t h a t t h i s s i t u a t i o n s h o u l d be changed. H a l f o f t h e r e s p o n d e n t s , i n c l u d i n g a g e n e r a l p h y s i c i a n and a p s y c h i a t r i s t , t h o u g h t t h a t i t s h o u l d not be changed. The o t h e r h a l f answered t h a t change s h o u l d depend on t h e s i t u a t i o n . One respondent commented t h a t t h e d y i n g p a t i e n t s s h o u l d u s u a l l y be t o l d b u t w i t h d i s c r e t i o n a l l o w e d not t o t e l l some. Some i n t e r e s t i n g f i n d i n g s appear when t h e r e s p o n d e n t s a r e ask e d whether o r n o t t h e y b e l i e v e t h a t most p a t i e n t s u n d e r s t a n d t h e y a r e d y i n g when t h e y a r e t o l d about impending 135 death. The re s u l t s are s p l i t evenly across the response categories. T h i r t y - f i v e percent (35%) believe that the patients do understand, 35% believe that they do not, and 30% are unsure or suggest i t depends. Those who agree that patients understand when t o l d they are dying include the physicians, p s y c h i a t r i s t , and some s o c i a l workers. One physician even goes so far as to suggest that the patients "understand before they are t o l d " . Most health care workers take the opposite view. Those health care workers who concede that the patients might possibly understand suggest that i t r e a l l y depends on t h e i r c a p a b i l i t y of understanding t h e i r s i t u a t i o n . Not one respondent f e l t that there was a need for change i n t h i s area. In fact, h a l f of the respondents were opposed to change, and the other h a l f thought change was possible but only under ce r t a i n conditions. Next, we must consider the family of the dying patient and whether or not e f f o r t s are made to inform them of the impending death. Almost a l l (90%) of respondents d i d indeed believe that as a rule, e f f o r t s are made to inform the family that t h e i r r e l a t i v e i s dying. Only one respondent did not think that t h i s was done, and that person was a s o c i a l worker. Although the response to t h i s question was overwhelmingly p o s i t i v e , 31% s t i l l thought there was a need for change. This group only included s o c i a l workers and health care workers. The general physicians and p s y c h i a t r i s t thought change 136 u n n e c e s s a r y . The f i n a l i n d i c a t o r f o r t h e i s s u e o f communication about t h e s u b j e c t o f d e a t h and d y i n g c o n c e r n e d h o s p i t a l p e r s o n n e l p a r t i c i p a t i n g i n d i s c u s s i o n r e l a t e d t o d e a t h and d y i n g . T h r e e - q u a r t e r (76%) o f t h e r e s p o n d e n t s d i d not t h i n k t h a t d i s c u s s i o n o f t h i s n a t u r e was a v o i d e d , y e t 19% t h o u g h t t h a t t h e r e was a v o i d a n c e . These l a s t r e s p o n d e n t s were s o c i a l w o r k e r s and h e a l t h c a r e workers a g a i n . The m a j o r i t y (71%) o f t h e r e s p o n d e n t s s t a t e d t h a t t h e r e was no need f o r change i n t h i s a r e a . e) Q u a l i t a t i v e / A n a l y s i s f o r Open-Ended Q u e s t i o n s The f i n a l q u e s t i o n s i n S e c t i o n Three were open-ended q u e s t i o n s r e g a r d i n g t h e r e s p o n d e n t s ' o p i n i o n on t h e s t a t e o f a f f a i r s a t R i v e r v i e w H o s p i t a l r e g a r d i n g d y i n g p e o p l e , and what t h e y would recommend t a k e p l a c e t o a d d r e s s t h i s i s s u e . A q u a l i t a t i v e a n a l y s i s was done on t h e s e q u e s t i o n s . The f i r s t q u e s t i o n asked whether t h e r e s p o n d e n t s a g r e e d t h a t a l l t h a t can be done f o r t h e d y i n g p a t i e n t a t R i v e r v i e w H o s p i t a l was b e i n g done. The number o f r e s p o n d e n t s t h a t commented on t h i s q u e s t i o n was 17 out o f 23. The g e n e r a l consensus on t h e q u e s t i o n i n d i c a t e d t h a t t h e r e i s not enough b e i n g done. A p p r o x i m a t e l y 59% o f t h e r e s p o n d e n t s s t a t e d t h a t n ot enough was b e i n g done, whereas t h e r e m a i n i n g 41% t h o u g h t 137 that enough was being done. However, of t h i s l a t t e r group three of the responses were q u a l i f i e d . Many of the comments were directed at o u t l i n i n g the various areas of p r a c t i c e that could be improved to enhance the s i t u a t i o n for the dying patients, f a m i l i e s , and the caregivers. A f i r s t area of concern i s associated with the counselling and emotional support that the dying patient i s receiving. Approximately 29% of the respondents a r t i c u l a t e d t h i s concern. In p a r t i c u l a r , an observation was made that because the i n s t i t u t i o n i s operating according to a medical/ curative model, there i s l i t t l e p rovision for emotional, s p i r i t u a l , and psychological needs of the patient. Although there i s some agreement that physical and medical needs are being met, improvement i s needed i n terms of helping the dying patients to deal with t h e i r unfinished issues. It was explained that i n some instances patients meet t h e i r needs by having developed supportive relationships with s t a f f , but that for these s t a f f members i t was considered above-and-beyond t h e i r normal duties to maintain t h i s involvement. Therefore, s o c i a l support i s not provided for consistently across u n i t s . S i m i l a r l y , there was a recognition by some respondents (24%) that support for the families was lacking. Families as well need psychological and emotional support i n coming to terms with t h i s t r a n s i t i o n between l i f e and death of one of t h e i r members. 138 The s o c i a l worker r e s p o n d e n t s (18%) , i n p a r t i c u l a r , commented on t h e e m o t i o n a l w e l l - b e i n g o f t h e s t a f f c a r e g i v e r s . I t was n o t e d t h a t t h e s t r e s s t h a t t h e c a r e g i v e r s e x p e r i e n c e d i r e c t l y a f f e c t s t h e c a r e t h a t t h e y g i v e . I t was s u g g e s t e d t h a t s t a f f needs may be met t h r o u g h more e d u c a t i o n and t r a i n i n g , and s u p p o r t groups. The Human Re s o u r c e s department and t h e C h a p l a i n c o u l d t a k e a more a c t i v e r o l e i n p r o v i d i n g t r a i n i n g and e d u c a t i o n f o r t h e s t a f f who a r e d i r e c t l y i n v o l v e d i n c a r i n g f o r t h e d y i n g p a t i e n t and f a m i l y . As w e l l , r e s p o n d e n t s w i s h e d t h a t a d m i n i s t r a t i o n would t a k e a more a c t i v e r o l e i n p r o v i d i n g d e a t h and g r i e f workshops f o r s t a f f . One s o c i a l worker a l s o s u g g e s t e d t h a t i t i s i m p o r t a n t t o l o o k a t c r o s s - c u l t u r a l i s s u e s about d e a t h and d y i n g . T h i s same res p o n d e n t named p h y s i c i a n s as b e i n g t h e group t h a t needed t h e most t r a i n i n g i n d e a l i n g w i t h f a m i l i e s and p a t i e n t s , i n o r d e r t h a t t h e y s t o p d e l e g a t i n g some o f t h e u n p l e a s a n t t a s k s t o o t h e r s . In d e a l i n g w i t h t h e q u e s t i o n o f whether o r not a l l t h a t can be done f o r t h e d y i n g p a t i e n t i s b e i n g done, some o t h e r c o n c e r n s were r a i s e d . One i s s u e t h a t was n o t e d was t h e p r a c t i c e o f t r a n s f e r r i n g p a t i e n t s o f f t h e ward t o an a c u t e m e d i c a l environment (North Lawn) as t h e i r m e d i c a l needs i n c r e a s e . I t was r e c o g n i z e d t h a t sometimes t h e s e p a t i e n t s have been on t h e same ward f o r y e a r s and t h e n a r e s e n t t o d i e i n s t r a n g e s u r r o u n d i n g s w i t h s t a f f who do not know them. 139 A n o t h e r e t h i c a l i s s u e r a i s e d by a h e a l t h c a r e worker was t h e a g g r e s s i v e use o f codes. To e x p l a i n , codes a r e d e s i g n a t i o n s g i v e n t o p a t i e n t s r e g a r d i n g who w i l l r e c e i v e e x t r a o r d i n a r y l i f e - s a v i n g measures and who w i l l n o t . T h i s r e s p o n d e n t was d i s t u r b e d by t h e e f f e c t on t h e p a t i e n t o f m e d i c a l p r a c t i c e s g e a r e d t o save l i f e a t a l l c o s t s . T h i s seemed t o p r e v e n t some p a t i e n t s from d y i n g i n a d i g n i f i e d and p e a c e f u l way. The h e a l t h c a r e worker n o t e s , "There i s supposed t o be peace and a c c e p t a n c e i n d e a t h . W i t h a p o l i c y such as t h i s , and w i t h t h e age o f t h e p a t i e n t i n v o l v e d - how can t h e y d i e p e a c e f u l l y ? " . A l t h o u g h most o f t h e r e s p o n d e n t s a g r e e d t h a t n o t a l l was b e i n g done and t h a t t h e r e were a r e a s o f s e r v i c e t h a t c o u l d be improved, t h e r e were some r e s p o n d e n t s who f e l t t h e s i t u a t i o n t o be s a t i s f a c t o r y . I n f a c t , 6 out o f 10 h e a l t h c a r e w o r k e r s t h o u g h t t h a t a l l t h a t c o u l d be done was b e i n g done. Says one • h e a l t h c a r e worker, " I b e l i e v e t h a t t h e d y i n g p a t i e n t a t R i v e r v i e w H o s p i t a l has t h e b e s t p o s s i b l e c a r e a d m i n i s t e r e d t o she/he ( s i c ) and t h a t she/he ( s i c ) a r e a l l o w e d t o d i e w i t h d i g n i t y " . I n p a r t i c u l a r i t was b e l i e v e d t h a t e v e r y t h i n g was b e i n g done f o r t h e e x t e n d e d c a r e t y p e g e r i a t r i c p a t i e n t . One p s y c h i a t r i s t a l s o agreed, b u t c a l l e d f o r p r a c t i c e t o be f o r m a l i z e d by a p a l l i a t i v e c a r e u n i t o r team. The second open-ended q u e s t i o n c o n c e r n e d t h e need f o r a s p e c i a l program t o be implemented ( i e . p a l l i a t i v e c a r e u n i t , p a l l i a t i v e c a r e team) t o a d d r e s s t h e needs o f t h e d y i n g 140 p a t i e n t and t h e i r f a m i l i e s . A t o t a l o f 17 out o f t h e 23 r e s p o n d e n t s answered t h i s q u e s t i o n . Only two o f t h e s e s e v e n t e e n r e s p o n d e n t s d i d not t h i n k t h a t a " s p e c i a l program" s h o u l d be implemented. A number o f o t h e r r e s p o n d e n t s a g r e e d on t h e need f o r a p a l l i a t i v e c a r e program b u t wanted t o add some q u a l i f i c a t i o n s and r e s t r i c t i o n s on t h e n a t u r e o f t h i s "program". One s o c i a l worker and f i v e h e a l t h c a r e w o r k e r s had no comment t o make. I t would appear from t h o s e who a r e i n agreement about i m p l e m e n t i n g a s p e c i a l program t h a t a p a l l i a t i v e c a r e team (29%) i s somewhat p r e f e r a b l e t o a p a l l i a t i v e c a r e u n i t (18%) . There i s some c o n c e r n about s e g r e g a t i n g d y i n g p a t i e n t s and t a k i n g them out o f t h e i r home env i r o n m e n t . A p a l l i a t i v e c a r e team c o u l d p r o v i d e t h e a d d i t i o n a l c a r e needs on t h e home ward so t h a t t h e d y i n g p a t i e n t c o u l d remain i n f a m i l i a r s u r r o u n d i n g amongst p e o p l e t h e y know. A p a l l i a t i v e c a r e team c o u l d a l s o make p r o v i s i o n s f o r i n c r e a s e d emphasis on c o u n s e l l i n g t o d e a l w i t h t h e e m o t i o n a l i s s u e s , s t r e s s , and 'a d j u s t m e n t ' on t h e p a r t o f t h e d y i n g p a t i e n t s and t h e i r f a m i l y . Those who agree t h a t a p a l l i a t i v e c a r e u n i t i s n e c e s s a r y (18%) s u g g e s t t h a t p a t i e n t and f a m i l y needs can o n l y be met by s t a f f w o r k i n g i n a s p e c i a l a r e a . I f a u n i t was a v a i l a b l e , s u g g e s t s a h e a l t h c a r e worker, p e o p l e would be i n a b e t t e r p o s i t i o n t o s u p p o r t one a n o t h e r . As w e l l , a s p e c i a l a r e a w i t h i n t h e h o s p i t a l would p r o v i d e t h e environment f o r p a t i e n t s 141 to come to peace with themselves and t h e i r death, and for families to better deal with the impending l o s s . It i s recognized that families are often struggling with g u i l t f eelings about having a r e l a t i v e i n a mental h o s p i t a l . The pastoral care worker comments on the family: "Families need to know that 'working through' g r i e f and death i s very healthy. [Families also need to come to terms with] t h e i r lack of understanding of i l l n e s s e s that deprived a loved one of a 'normal l i f e ' " . A p a l l i a t i v e care unit would provide such a safe environment to confront these issues. It i s also suggested by some respondents i n response to t h i s question on a s p e c i a l program, that a p a l l i a t i v e care p o l i c y and philosophy i s more important than e i t h e r a p a l l i a t i v e care unit or team at t h i s stage. Further, i f p o l i c y procedures were implemented on the wards, a s p e c i a l program would not be necessary. It i s recommended that the Hospital administrators should provide a clear, straightforward p o l i c y and procedural guidelines on death and dying issues. "The fact that someone i s committed under the Mental Health Act should not be a l i m i t to a person's right to have a d i g n i f i e d , pain free, comfortable death" (social worker). In constructing such guidelines, i t i s suggested that the h o s p i t a l administrators consult patients, fa m i l i e s , and the 142 v a r i o u s d i s c i p l i n e s f o r i n p u t i n t o t h i s m a t t e r . I n p a r t i c u l a r , one s o c i a l worker r e q u e s t e d t h a t t h e r e be a p o l i c y and p r o c e d u r e s f o r s t a f f t o f o l l o w i n p r o v i d i n g s u p p o r t and g u i d a n c e t o t h e r e l a t i v e s o f t h e p a t i e n t who has d i e d . I n o t h e r words, t h e r e s h o u l d be p o l i c y r e g a r d i n g bereavement f o l l o w - u p p r o c e d u r e s . The two g e n e r a l p h y s i c i a n s were t h e most r e t i c e n t on t h i s q u e s t i o n . One p h y s i c i a n s i m p l y responded by s a y i n g , " I t would be i n t e r e s t i n g t o s t u d y such a p r o p o s a l " . The o t h e r was adamant t h a t t h e r e was no need f o r a " p o l i c y " , and i f a program were t o be implemented i t would be one i n v o l v i n g few p e o p l e , "no r u l e s , no p r o c e d u r a l r e d t a p e , and c o n s u l t a t i o n o n l y " . I n c o n t r a s t , b o t h p s y c h i a t r i s t s were i n agreement t h a t a p a l l i a t i v e c a r e team s h o u l d be i n p l a c e , and t h a t i n d e e d a l l f a c i l i t i e s s h o u l d have such a team. 6. SUMMARY AND CONCLUSIONS I n t h i s c h a p t e r t h e f i n d i n g s from t h e t h e s i s r e s e a r c h p r o j e c t were p r e s e n t e d . A q u a n t i t a t i v e and q u a l i t a t i v e a n a l y s i s were c o n d u c t e d . The q u a n t i t a t i v e a n a l y s i s i n c l u d e d u n i v a r i a t e , b i v a r i a t e , and m u l t i v a r i a t e a n a l y s i s u s i n g SPSS:X. More s p e c i f i c a l l y , t h e q u a n t i t a t i v e r e s u l t s s uggest t h a t o v e r a l l p e r s o n a l a n x i e t y o f d e a t h o f t h e s e p r o f e s s i o n a l s f a l l s w i t h i n t h e norm. However, f o r g e n e r a l p h y s i c i a n s t h e y s c o r e d 143 below the norm, and the p s y c h i a t r i s t s and pastoral care worker are above the norm. When the DAS scores were correlated with sex and age there was no s i g n i f i c a n c e , and only a marginal association was found with marital status and length of work experience at Riverview Hospital. Furthermore, DAS scores d i d not correlate s i g n i f i c a n t l y with having worked with dying i n d i v i d u a l s as a student, p r o f e s s i o n a l l y , or currently. In terms of education, formal education had no r e a l impact on DAS scores. However, having experienced some form of informal education such as attending an i n - s e r v i c e or workshop had considerable s i g n i f i c a n c e . In fact, those who had informal education scored DAS scores below the norm as opposed to those who had not who scored well above the norm. Those professionals who perceived themselves to be competent and/or confident i n working with dying i n d i v i d u a l s and t h e i r f a m i l i e s also scored lower i n terms of personal death anxiety. With respect to organizational issues there was agreement that physical needs of the dying i n d i v i d u a l were being met. Emotional needs of the dying i n d i v i d u a l and needs of the caregivers (ie. s t a f f ) were said to be not met. Also, there was agreement that there was a need for change i n terms of how the family needs were being met, as well as s p i r i t u a l needs. Generally, work routine was thought to i n t e r f e r e with working "psychologically" with 'the dying, e s p e c i a l l y for health care workers, p s y c h i a t r i s t s , and s o c i a l workers. 144 The m a j o r i t y o f t h e h e a l t h c a r e p r o f e s s i o n a l s p e r c e i v e d t h e i r r o l e t o be s t e r e o t y p e d , a l t h o u g h o n l y t h e s o c i a l w orkers and h e a l t h c a r e workers t h o u g h t t h a t t h i s a r e a needed t o be changed. I n f a c t , t h e s e two groups p e r c e i v e d t h a t t h e s t e r e o t y p i n g o f t h e i r r o l e l i m i t e d t h e i r a b i l i t y t o p r o v i d e t h e r a p e u t i c c a r e f o r t h e d y i n g . There was s t r o n g agreement t h a t teamwork e x i s t e d ; however, when asked whether o r not t h e y worked as p a r t o f a team when w o r k i n g w i t h t h e d y i n g , s o c i a l w o r k e r s and h e a l t h c a r e w o r kers answered t h a t t h e y d i d n o t . W i t h r e s p e c t t o t h e i s s u e o f c o n v e y i n g and e x c h a n g i n g d i a g n o s t i c i n f o r m a t i o n , t h e r e s u l t s s u g g e s t e d t h a t p a t i e n t s were g e n e r a l l y not t o l d t h a t t h e y were d y i n g , and t h a t t h e r e was no need f o r change i n t h i s a r e a . The r e s p o n d e n t s were even unsure as t o whether o r not p a t i e n t s even u n d e r s t o o d t h i s i n f o r m a t i o n . C o n v e r s e l y , f a m i l i e s o f t h e d y i n g p a t i e n t s were t o l d as a r u l e . The h e a l t h c a r e p r o f e s s i o n a l s a l s o e v a l u a t e d t h a t t h e s t a f f does not g e n e r a l l y a v o i d d i s c u s s i n g t h e i s s u e o f d e a t h and d y i n g . O v e r a l l , t h e consensus was t h a t not enough i s b e i n g done f o r t h e d y i n g p a t i e n t , e s p e c i a l l y i n p r o v i s i o n o f e m o t i o n a l and p s y c h o l o g i c a l s u p p o r t . As w e l l , t h e r e was r e c o g n i t i o n t h a t t h e r e needed t o be i n c r e a s e d s u p p o r t g i v e n t o t h e f a m i l i e s . The s o c i a l w orkers were t h e s t r o n g e s t a d v o c a t e s f o r i n c r e a s e d c o n s i d e r a t i o n i n t o t h e e m o t i o n a l w e l l - b e i n g o f t h e s t a f f i t s e l f , t h r o u g h e d u c a t i o n and t r a i n i n g and s u p p o r t mechanisms. There was l e s s consensus as t o what form c a r e o f t h e d y i n g i n d i v i d u a l and t h e f a m i l i e s s h o u l d t a k e . The p r e s e n c e o f a p a l l i a t i v e c a r e team seemed p r e f e r a b l e t o a s e p a r a t e p a l l i a t i v e c a r e u n i t , f o l l o w e d by a p h i l o s o p h i c a l a p proach t h a t i n v o l v e s no imposed s t r u c t u r e o r r e g u l a t i o n s . The r e s u l t s t h e n i n d i c a t e t h a t f u r t h e r r e s e a r c h i n t o t h e n a t u r e o f p a l l i a t i v e c a r e a t R i v e r v i e w H o s p i t a l must be c a r r i e d o u t . I n t h e n e x t c h a p t e r , t h e d i s c u s s i o n r e s u l t i n g from t h e s e f i n d i n g s and f i n a l c o n c l u s i o n s w i l l be p r e s e n t e d . CHAPTER FIVE D i s c u s s i o n o f R e s u l t s and C o n c l u s i o n s 1. INTRODUCTION T h i s r e s e a r c h p r o j e c t has been e n t i t l e d " P e r c e p t i o n s o f P a l l i a t i v e Care P r a c t i c e o f H e a l t h Care P r o f e s s i o n a l s i n a M e n t a l I n s t i t u t i o n " . T h e r e f o r e , not t o sound redundant, i t i s a s t u d y o f p e r c e p t i o n s o f p r a c t i c e and not a c t u a l p r a c t i c e . I t would be i m p o s s i b l e t o s t u d y a c t u a l p r a c t i c e by means o f t h e methodology chosen. I t i s a s u r v e y o f p a r t i c u l a r p r o f e s s i o n a l s a t a p o i n t i n t i m e on what t h e y b e l i e v e t o be t h e p r a c t i c e w i t h d y i n g g e r i a t r i c i n d i v i d u a l s . Vander Zanden (1984) d e f i n e s p e r c e p t i o n as "the p r o c e s s by w h i c h we g a t h e r and i n t e r p r e t i n f o r m a t i o n " (p.33) and wh i c h s e r v e s as t h e m e d i a t i n g l i n k , between i n d i v i d u a l s and t h e i r e n v i r o n m e n t . T h e r e f o r e , p e r c e p t i o n p e r m i t s us t o sense t h e w o r l d around us and a s s i g n meaning t o t h i s s e n s o r y i n p u t . We do n o t r e s p o n d d i r e c t l y t o e v e n t s , o b j e c t s , and p e o p l e , but t o t h e meaning we a t t r i b u t e t o them. T h e r e f o r e , t h e r e s p o n d e n t s ' t a s k i n t h i s r e s e a r c h p r o j e c t was t o d e s c r i b e t h e i r environment by a b s t r a c t i n g , g e n e r a l i z i n g , and i d e a l i z i n g t h e c o n t e x t . They were i n t u r n a s k e d t o d e s c r i b e t h e i r p e r c e p t i o n s w i t h i n t h e c o n c e p t u a l i z e d c a t e g o r i e s g i v e n t o them. Concepts were used t o o r g a n i z e and 146 147 make sense o f t h e i r p r a c t i c e e x p e r i e n c e s . I t f o l l o w s from t h i s , t h a t t h e a u t h o r as w e l l , i s u s i n g h e r own p e r c e p t i o n s o f t h e f i n d i n g s t o make i n t e r p r e t a t i o n s . The p o s s i b i l i t y f o r e r r o r i n i n t e r p r e t a t i o n becomes g r e a t e r as we g e t f u r t h e r removed from t h e s o u r c e . T h e r e f o r e , t h i s t y p e o f s t u d y has a s e r i o u s weakness and due c a u t i o n must be t a k e n i n g e n e r a l i z i n g from t h e r e s u l t s . T h i s needs t o be f u r t h e r emphasized due t o t h e s m a l l sample s i z e . As w e l l , i t i s i m p o r t a n t t o n o t e t h a t t h o s e who f i l l e d out t h e q u e s t i o n n a i r e s may have been l e s s a n x i o u s t o b e g i n w i t h . N e v e r t h e l e s s , r e s p o n s e from each o f t h e p r o f e s s i o n a l groups was a p p r e c i a t e d . 2. SECTION ONE: Death A n x i e t y S c a l e (DAS) A number o f comments have been made i n t h e l i t e r a t u r e r e g a r d i n g t h e d e a t h a n x i e t y l e v e l o f many o f t h e h e a l t h p r o f e s s i o n a l s , e s p e c i a l l y p h y s i c i a n s . A l t h o u g h t h e f i n d i n g s o f t h i s s t u d y d i d not s u p p o r t many o f t h o s e p r e d i c t i o n s on t h i s s u b j e c t , t h e f i n d i n g s a r e n e v e r t h e l e s s p r e d i c t a b l e i n many ways. F o r example, t h e two g e n e r a l p h y s i c i a n r e s p o n d e n t s b o t h s c o r e d v e r y low, and t h i s i s c o n t r a r y t o F e i f e l ' s (1955) h y p o t h e s i s t h a t p h y s i c i a n s have h i g h e r d e a t h a n x i e t y . A l t h o u g h t h e s e f i n d i n g s do not s u p p o r t h i s h y p o t h e s i s , t h a t d o e s n't n e c e s s a r i l y mean t h a t i t i s any l e s s p l a u s i b l e . I t does s u g g e s t t h a t we c o n s i d e r some f a c t o r s t h a t might have 148 lead us to these p a r t i c u l a r r e s u l t s . Areas to consider might be the s e t t i n g and practice s i t u a t i o n that the physicians are working i n . Most of the patients that these physicians are involved with i n the G e r i a t r i c D i v i s i o n of Riverview Hospital are e i t h e r considered c h r o n i c a l l y i l l or are admitted for assessment and short-term treatment. Neither of these two s i t u a t i o n s are perhaps as anxiety-provoking as the acute care s i t u a t i o n where there would be a preponderance of l i f e and death decisions to be made. As well, the general attitudes about the e l d e r l y , and mentally i l l e l d e r l y i n p a r t i c u l a r , that suggests that t h e i r death i s more predictable and acceptable may p r e v a i l . Thus, for the physician, t h i s environment and attitudes that p e r s i s t may allow the physician to remain detached and use other defense mechanisms to control personal anxiety. It also cannot be ruled out that these two physicians have had p o s i t i v e personal experiences with death and so t h e i r anxiety around death may be lower. Furthermore, i f the s i t u a t i o n with a terminally i l l patient becomes too intense for the physician, that physician can create a socio-emotional distance by r e f e r r i n g the patient to pastoral care. Indeed there was a sense that t h i s p r a c t i c e was happening at Riverview Hospital i n the q u a l i t a t i v e analysis. A number of respondents suggested that the burden for providing education and support should f a l l on pastoral care services, as i f i t was the most appropriate department to 149 d e a l w i t h d e a t h i s s u e s . M i s c o n c e p t i o n s e x i s t about t h e r o l e o f p a s t o r a l s e r v i c e s i n c a r e f o r t h e d y i n g . However, c l e r g y v a r y as much i n a b i l i t y t o d e a l w i t h problems o f d e a t h and bereavement as do o t h e r h e a l t h c a r e p r o f e s s i o n a l s . T h i s was shown i n t h i s s t u d y where t h e p a s t o r a l c a r e worker had t h e h i g h e s t d e a t h a n x i e t y s c o r e as a r e p r e s e n t a t i v e o f t h a t p r o f e s s i o n a l group. I t i s i m p o s s i b l e t o know whether o r not t h i s p a r t i c u l a r r e s pondent had more d e a t h a n x i e t y because o f i n t e n s e e x p o sure t o t h e r e a l i t i e s o f R i v e r v i e w H o s p i t a l due t o t h e r o l e . P a s t o r a l c a r e workers a r e n o r m a l l y b r o u g h t i n t o h a n d l e such c a s e s , so t h e r e would be l i t t l e o p p o r t u n i t y t o a v o i d t h e s i t u a t i o n i f i t a r o s e . A l t h o u g h p a s t o r a l c a r e w o r k e r s a r e a v i t a l d i m e n s i o n o f t h e p a l l i a t i v e c a r e team, i t must be remembered t h a t t e r m i n a l p a t i e n t s have needs a s i d e from r e l i g i o u s f o r m a l i t i e s . We need t o a p p r o p r i a t e l y u t i l i z e p a s t o r a l c a r e s e r v i c e s and not s i m p l y use them t o d e a l w i t h a s i t u a t i o n we might f i n d u n c o m f o r t a b l e f o r o u r s e l v e s . A g a i n i t i s not s u r p r i s i n g t h a t p s y c h i a t r i s t s a l s o s c o r e d above t h e norm. T r a d i t i o n a l l y , p s y c h i a t r i s t s have not been i n v o l v e d i n w o r k i n g w i t h d y i n g i n d i v i d u a l s , a l t h o u g h t h e r e i s a p l a c e f o r t h e i r s e r v i c e . T h i s i s v e r y i n t e r e s t i n g because many o f t h e r e a l i t i e s t h a t d y i n g p a t i e n t s e x p e r i e n c e such as d e p r e s s i o n , s e p a r a t i o n , i s o l a t i o n , o b j e c t i f i c a t i o n , and i n v a l i d i s m b e l o n g w i t h i n t h e p r o v i n c e o f p s y c h i a t r y . Weisman (1978) b e l i e v e s t h a t one r e a s o n why p s y c h i a t r i s t s do not t r e a t 150 t h e d y i n g i s f o u n d i n t h e v i e w p o i n t o f p s y c h i a t r i c t r a i n i n g i t s e l f . He s u g g e s t s t h a t t h e o r i e n t a t i o n o f p s y c h i a t r i s t s i s t o assume t h a t p s y c h i a t r i c p a t i e n t s a r e p h y s i c a l l y h e a l t h y , and t h a t t h e "cause" o f t h e m e n t a l d i s o r d e r i s not l i k e l y t o be t h e same as t h a t w h i c h produces o r g a n i c d i s e a s e s from w h i c h p e o p l e d i e . C o n s e q u e n t l y , p s y c h i a t r i s t s a r e d i f f i d e n t about t r e a t i n g p a t i e n t s who a r e " r e a l l y s i c k " . Most p s y c h i a t r i s t s a r e t r a i n e d t o p r o v i d e p s y c h o t h e r a p y i n an o f f i c e p r a c t i c e o r f o r h o s p i t a l management o f i n s t i t u t i o n a l i z e d p a t i e n t s . They a r e s t r i k i n g l y u n s o p h i s t i c a t e d about e m o t i o n a l problems o f p h y s i c a l l y i l l o r t e r m i n a l l y i l l p a t i e n t s . I n terms o f t h e Death A n x i e t y S c o r e s f o u n d w i t h t h e s o c i a l work sample, t h e r e s u l t s a r e not t h a t s u r p r i s i n g . I t might be p r e d i c t e d t h a t as a group mean s c o r e s would f a l l w i t h i n t h e norm. The v a r i a b i l i t y o f i n d i v i d u a l s c o r e s a c r o s s t h e range d e m o n s t r a t e s t h a t i n d i v i d u a l l y s o c i a l w o r k e r s a r e as s u s c e p t a b l e as any o t h e r h e a l t h c a r e p r o f e s s i o n a l t o e x p e r i e n c e d e a t h a n x i e t y . However, p r o f e s s i o n a l l y t h e group s c o r e d low and t h i s may speak f o r t h e t y p e o f t r a i n i n g t h a t s o c i a l w o r k e r s r e c e i v e , h i s t o r i c a l r o l e i n p a l l i a t i v e c a r e , and g e n e r a l i n t e r e s t i n t h e s u b j e c t o f p a l l i a t i v e c a r e . S o c i a l work t r a i n i n g i s o f f e r e d w i t h i n a h o l i s t i c v i e w p o i n t and l a r g e l y f o c u s e s on a l l t y p e s o f g r i e f and l o s s i s s u e s , and s e l f - d e t e r m i n a t i o n . T h e r e f o r e , t h e r e l a t i o n s h i p between t h e p r i n c i p l e s o f p a l l i a t i v e c a r e and o f s o c i a l work as a 151 p r o f e s s i o n complement each o t h e r . The p r e d i c t i o n s t h a t were made b e f o r e t h e s t u d y r e g a r d i n g p e r s o n a l v a r i a b l e s were t h a t DAS s c o r e s would be g r e a t e r f o r fe m a l e s t h a n f o r males; would d e c r e a s e as age i n c r e a s e s ; and would i n v e r s e l y v a r y w i t h l e n g t h o f e x p e r i e n c e w o r k i n g a t R i v e r v i e w H o s p i t a l . These p r e d i c t i o n s were n ot s u p p o r t e d as t h e l e v e l o f a s s o c i a t i o n was not s i g n i f i c a n t . T h i s l a c k o f s i g n i f i c a n c e s i m p l y may be due t o t h e s m a l l sample. However, i t may a l s o be due t o t h e i n s t r u m e n t i t s e l f . The s c a l e was d e v e l o p e d i n 1969 and t h e r e f o r e , i s perhaps o u t d a t e d t o some e x t e n t . F o r example, one would be h a r d -p r e s s e d i n t h i s f a s t - p a c e d w o r l d t o f i n d many p e o p l e who a r e not " o f t e n d i s t r e s s e d by t h e way t i m e f l i e s so v e r y r a p i d l y " , o r who would n ot agree w i t h " I o f t e n t h i n k about how s h o r t l i f e r e a l l y i s " . A l s o , i n t h i s r a t h e r u n s t a b l e t i m e p o l i t i c a l l y , e c o n o m i c a l l y and s o c i a l l y , most would n ot d i s a g r e e w i t h " I f e e l t h a t t h e f u t u r e h o l d s n o t h i n g f o r me t o f e a r " . C e r t a i n l y p e o p l e a r e a f r a i d f o r t h e i r j o b s , income s e c u r i t y , o r f a m i l y w e l l - b e i n g . A l s o , t h e s t a t e m e n t " I shudder when I he a r p e o p l e t a l k i n g about a W o r l d War I I I " i s perhaps not as r e l e v a n t as i t may have been i n t h e 1960's and 70's. T h e r e f o r e , t h e r e s u l t s f o r t h i s s c a l e may have been v e r y d i f f e r e n t i f i t was m o d i f i e d f o r t h e 1990's. 152 3. SECTION TWO: L I F E , WORK, and EDUCATIONAL EXPERIENCE As was d i s c u s s e d i n e a r l i e r c h a p t e r s , t h e l i f e , work and e d u c a t i o n a l e x p e r i e n c e o f a p e r s o n h e l p shape p e r s o n a l and p r o f e s s i o n a l a t t i t u d e s t o w a r d d e a t h and t h u s , subsequent b e h a v i o u r w i t h d y i n g p e o p l e . Thus, i t was w i t h some c o n f i d e n c e t h a t t h e f o l l o w i n g p r e d i c t i o n s had been made: i . DAS w i l l v a r y i n v e r s e l y w i t h p e r s o n a l e x p e r i e n c e o f d e a t h o f a s i g n i f i c a n t o t h e r i i . DAS w i l l v a r y i n v e r s e l y w i t h p a s t work e x p e r i e n c e w i t h t h e d y i n g as a s t u d e n t i i i . DAS w i l l v a r y i n v e r s e l y w i t h p a s t work e x p e r i e n c e w i t h t h e d y i n g as a p r o f e s s i o n a l i v . DAS w i l l i n c r e a s e i f c u r r e n t l y w o r k i n g w i t h t h e d y i n g v. DAS w i l l v a r y i n v e r s e l y w i t h f o r m a l e d u c a t i o n a l e x p e r i e n c e and t r a i n i n g i n w o r k i n g w i t h t h e d y i n g and t h e i r f a m i l i e s v i . DAS w i l l v a r y i n v e r s e l y w i t h i n f o r m a l e d u c a t i o n a l e x p e r i e n c e and t r a i n i n g i n w o r k i n g w i t h t h e d y i n g and t h e i r f a m i l i e s , i v . DAS w i l l v a r y i n v e r s e l y w i t h t h e f e e l i n g o f competence and/or c o n f i d e n c e i n w o r k i n g w i t h d y i n g p e o p l e and t h e i r f a m i l i e s . I n r e g a r d s t o t h e f i r s t p r e d i c t i o n , t h e r e was no apparent d i f f e r e n c e i n s c o r e s f o r t h o s e who had e x p e r i e n c e d a d e a t h o f 153 someone c l o s e and t h e respondent who had n o t . T h i s i s not e n t i r e l y s u r p r i s i n g s i n c e t h e r e s p o n d e n t s were not as k e d about t h e r e c e n c y o f t h e d e a t h o r t h e degree o f s i g n i f i c a n c e o f t h e p e r s o n who d i e d t o t h e re s p o n d e n t . I n t h e l i t e r a t u r e r e v i e w , i t was n o t e d t h a t DAS t e n d e d t o i n c r e a s e i f t h e d e a t h o f a s i g n i f i c a n t o t h e r o c c u r r e d i n t h e l a s t two y e a r s . H a v i n g worked w i t h d y i n g p a t i e n t s as a s t u d e n t had some r e l a t i o n s h i p t o DAS s c o r e s , e s p e c i a l l y f o r s o c i a l w o r k e r s , p h y s i c i a n s , and h e a l t h c a r e w o r k e r s . The mean s c o r e f o r s o c i a l w o r k e r s who had worked as s t u d e n t s was s u b s t a n t i a l l y l o w e r t h a n t h o s e who had n o t . I t i s i n t e r e s t i n g t o no t e t h a t h e a l t h c a r e w o r kers were unsure o r th o u g h t i t n o t a p p l i c a b l e about w o r k i n g w i t h d y i n g p a t i e n t s as a s t u d e n t . Working with d y i n g p a t i e n t s as p r o f e s s i o n a l s d i d not r e v e a l a n y t h i n g s i g n i f i c a n t o t h e r t h a n t h e r e was a l a r g e m a j o r i t y who had done so. Those who had not were h e a l t h c a r e w o r k e r s . C u r r e n t l y w o r k i n g w i t h d y i n g p a t i e n t s d i d not seem t o cause a v a r i a t i o n i n DAS s c o r e s . T h i s r e s u l t was s u r p r i s i n g as common sense would t e l l us t h a t c l o s e r p r o x i m i t y t o d e a t h s h o u l d i n c r e a s e our d e a t h a n x i e t y . The most s u r p r i s i n g r e s u l t s o f t h i s s e c t i o n were found r e g a r d i n g t h e two q u e s t i o n s on e d u c a t i o n . F o r m a l e d u c a t i o n d i d n o t seem t o have an impact on DAS s c o r e s as compared t o i n f o r m a l e d u c a t i o n where s i g n i f i c a n c e was v e r y h i g h . P o s s i b l e e x p l a n a t i o n s may have t o do w i t h t h e q u a l i t y o f e d u c a t i o n 154 and/or t h e m o t i v a t i o n f o r a t t e n d i n g . Those who a c t u a l l y r e c e i v e d f o r m a l e d u c a t i o n may be no d i f f e r e n t t h a n t h o s e who had not i f t h e q u a l i t y o f i n s t r u c t i o n was p o o r , o r i f t h e s t u d e n t s were not e m o t i o n a l l y ready t o l e a r n about t h i s t o p i c . Those who a t t e n d e d i n f o r m a l s e r v i c e would do so on t h e i r own v o l i t i o n , and would p r o b a b l y a t t e n d because t h e y were l e s s a n x i o u s and not t h e o p p o s i t e . A l t h o u g h s i g n i f i c a n c e was not g r e a t , t h o s e who f e l t c o n f i d e n t and/or competent s c o r e d l o w e r b e t t e r on DAS compared t o t h o s e who were not or were un s u r e . T h e r e f o r e , t h e r e seems t o be an a s s o c i a t i o n between t h e p e r c e p t i o n o f b e i n g c o n f i d e n t and/or competent and t h e l e v e l o f d e a t h a n x i e t y one w i l l e x p e r i e n c e . I n t u i t i v e l y i t makes sense t h a t , i f you f e e l c o n f i d e n t and/or competent, your a n x i e t y about a s i t u a t i o n s h o u l d be l o w e r . These f i n d i n g s d emonstrate t h a t . Those who were unsure s c o r e d h i g h e r t h a n t h o s e who r esponded t h a t t h e y d i d n ot f e e l c o n f i d e n t and/or competent. P e o p l e who admit t h e i r v u l n e r a b i l i t i e s may be l e s s a n x i o u s t h a n p e o p l e who have not y e t f a c e d them d i r e c t l y . One way t h a t R i v e r v i e w H o s p i t a l might approach t h e i s s u e o f competency i n w o r k i n g w i t h d y i n g p a t i e n t s would be t o o f f e r some form o f e d u c a t i o n a l program or o r i e n t a t i o n t o t h o s e a l r e a d y w o r k i n g w i t h d y i n g p e o p l e and t o t h o s e who w i l l be. T h i s was s u g g e s t e d by a number o f r e s p o n d e n t s . The f o c u s o f a program c o u l d be narrow such as p a i n c o n t r o l or c o u n s e l l i n g 155 t h e b e r e a v e d , o r c o u l d be b r o a d i n f o c u s . I t has been s a i d t h a t i t i s t h e r e s p o n s i b i l i t y f o r anyone w o r k i n g w i t h d y i n g p e o p l e t o be p r e p a r e d f o r d o i n g so ( C o r r , 1988). P r e p a r a t i o n e n t a i l s : 1) i n i t i a t i n g r e f l e c t i o n s on one's own t h o u g h t s and f e e l i n g s about d e a t h , and 2) a s t u d y o f r e l e v a n t c o n t e n t i n t h e f i e l d o f d e a t h , d y i n g , and bereavement ( C o r r , 1988) . H e l p e r s s h o u l d be c a u t i o u s about u n d e r t a k i n g i n t e r a c t i o n w i t h t h e d y i n g ' u n t i l t h e y have f i r s t come t o terms w i t h t h e i r own c o n c e p t s , a t t i t u d e s , l i m i t s , m o t i v a t i o n and needs i n t h i s a r e a . To b e l i e v e o t h e r w i s e i s t o n e g l e c t o m n i p r e s e n t c o n c e r n s f o r one's own m o r t a l i t y . Of c o u r s e , t h i s p r o c e s s o f r e f l e c t i o n and s e l f - d i s c o v e r y can n e v e r be f i n i s h e d . New s t a f f members c o u l d be o r i e n t e d t o t h e b a s i c knowlege about p a l l i a t i v e / h o s p i c e c a r e . There needs t o be a t h e o r e t i c a l component t o t h i s o r i e n t a t i o n , as w e l l as p r a c t i c a l and e x p e r i e n t i a l t r a i n i n g t h a t f o c u s e s on t h e d y i n g s i t u a t i o n i n a h o l i s t i c way. A number o f methods c o u l d be used. F i r s t , t h e p r e s e n c e o f p o s i t i v e s t a f f r o l e models who can t e a c h and p r o v i d e s u p p o r t f o r new s t a f f members i s c r u c i a l . The use o f a "buddy system", whereby an e x p e r i e n c e d s t a f f member p r o v i d e s s u p p o r t and h e l p t o t h e new s t a f f member on a one-to-one b a s i s , o r t h e use o f a w e l l - o r g a n i z e d team approach can be v e r y v a l u a b l e i n i n t r o d u c i n g new s t a f f members t o t h e most e f f e c t i v e ' ways o f d e a l i n g w i t h t h e p r a c t i c a l problems and s t r e s s e s i n h e r e n t i n c a r i n g f o r t h e t e r m i n a l l y i l l . " O r i e n t a t i o n s h o u l d i n c l u d e e d u c a t i o n on m a t t e r s r e l a t i n g t o d e a t h and d y i n g , p a l l i a t i v e c a r e , h o s p i c e c o n c e p t s , pharmacology, c o n c e p t s o f p a i n and symptom c o n t r o l , l o c a l p o l i c y , n u r s i n g p r o c e d u r e s , and o t h e r m a t t e r s p a r t i c u l a r t o t h e a r e a t h a t t h e s t a f f member i s e n t e r i n g " (Zimmerman & Roche, 1986. p.116). E d u c a t i o n s h o u l d a l s o i n c l u d e t e c h n i q u e s i n s t r e s s r e d u c t i o n , s k i l l s needed f o r w o r k i n g i n a team, and r o l e e x p e c t a t i o n s . The need f o r c o n t i n u e d e d u c a t i o n a l programs f o r more e x p e r i e n c e d s t a f f must a l s o be acknowledged. " H o s p i c e c a r e i s not a "once t r a i n e d , always t r a i n e d p r o p o s i t i o n " (Zimmerman and Roche, 1986, p.117). O p p o r t u n i t i e s t o a t t e n d and p a r t i c i p a t e i n workshops o r i n - s e r v i c e s a r e e f f e c t i v e methods f o r p r o v i d i n g s t a f f members w i t h t h e i n t e l l e c t u a l i n p u t n e c e s s a r y f o r m a i n t a i n i n g a h i g h l e v e l o f p a t i e n t c a r e . A l s o , as t h i s s t u d y has shown, a t t e n d i n g such i n f o r m a l e d u c a t i o n a l programming can a l s o have an e f f e c t on p e r s o n a l ' d e a t h a n x i e t y . Moreover, such programs can h e l p a l l e v i a t e s t r e s s by p r o v i d i n g a b r e a k i n r o u t i n e . F i n a l l y , C o r r (1988) s u g g e s t s t h a t an e f f e c t i v e e d u c a t i o n a l program must, i n p a r t , a t t empt t o c o r r e c t i n b a l a n c e s i n i n d i v i d u a l and s o c i a l p e r c e p t i o n s o f d e a t h . 157 4. SECTION THREE: PERCEPTIONS OF PRACTICE a) O r g a n i z a t i o n a l C o n t e x t o f t h e H o s p i t a l The n e x t v a r i a b l e a d d r e s s e d was whether o r not t h e o r g a n i z a t i o n was a b l e t o meet needs o f p a t i e n t s , f a m i l i e s , and c a r e g i v e r s . The m a j o r i t y o f r e s p o n d e n t s i n d i c a t e d t h a t p h y s i c a l needs were b e i n g met. I t i s not s u r p r i s i n g t h a t t h e m a j o r i t y would f e e l t h a t p h y s i c a l needs were b e i n g met c o n s i d e r i n g t h a t R i v e r v i e w i s a h o s p i t a l and t h a t most p e r s o n n e l a r e m e d i c a l l y o r i e n t e d . E m o t i o n a l needs and s p i r i t u a l needs were p e r c e i v e d t o not be met as w e l l as t h e p h y s i c a l needs. T h i s i s perhaps t r u e f o r a l l t h e p a t i e n t s and not j u s t t h o s e who a r e d y i n g . Commonly, t h e q u a l i t y o f l i f e o f t h e l o n g - t e r m g e r i a t r i c p a t i e n t s a t R i v e r v i e w H o s p i t a l has d i s i n t e g r a t e d a t t h e p h y s i c a l , e m o t i o n a l , s o c i a l and s p i r i t u a l l e v e l s . They o f t e n l a c k a z e s t f o r l i f e ; t h e y m e r e l y e x i s t i n an a p a t h e t i c s t a t e w i t h o u t j o y , hope, l o v e , o r r e l a t e d n e s s t o o t h e r s . The p h y s i c a l s t r u c t u r e o f t h e wards, e s p e c i a l l y i n V a l l e y v i e w where t h e p a t i e n t s a r e m o s t l y i n e x t e n d e d c a r e , p r e s e n t s an u n s t i m u l a t i n g e nvironment. P a t i e n t s r a r e l y i n t e r a c t w i t h each o t h e r ; t h e o n l y communication t h e y engage i n i s w i t h t h e s t a f f . There i s more i n t e r a c t i o n w i t h t h e h i g h e r - f u n c t i o n i n g r e s i d e n t s o f t h e f r e e - s t a n d i n g u n i t s i n t h e G e r i a t r i c D i v i s i o n . I t does not appear from t h e r e s u l t s t h a t t h e s i t u a t i o n was much improved f o r t h e d y i n g i n d i v i d u a l and t h e r e 158 was a p e r c e i v e d need f o r change. E m o t i o n a l needs o f p a t i e n t s w i t h low m e n t a l c a p a c i t y a r e d i f f i c u l t t o meet. There may be an a s s u m p t i o n by s t a f f members t h a t because t h e p e r s o n i s s u f f e r i n g from dementia o r some o t h e r p r o g r e s s i v e n e u r o l o g i c a l d i s o r d e r t h a t she/he does not have t h e c a p a c i t y t o e x p r e s s e m o t i o n a l needs t h a t a r e r e a l and t h a t can be a t t e n d e d t o . A n o t h e r p o s s i b i l i t y i s t h a t t h e s e needs a r e e x p r e s s e d b u t a r e not r e c o g n i z e d because t h e y a r e masked w i t h i n h a l l u c i n a t i o n s o r c o n f u s i n g c h a t t e r . I t t a k e s a tremendous amount o f p a t i e n c e and energy t o i n t e r p r e t and t r a n s l a t e between what i s a t r u e e m o t i o n a l need and what i s n o t . S p i r i t u a l needs must be d i f f e r e n t i a t e d from p s y c h o s o c i a l and e m o t i o n a l needs and t h u s t h e y were i n c l u d e d i n t h e s t u d y . A s p i r i t u a l need has been d e f i n e d as t h e l a c k o f a dynamic p e r s o n a l r e l a t i o n s h i p w i t h a h i g h e r s p i r i t u a l b e i n g ( P i l e s , 1990). A s p i r i t u a l need can i n c l u d e : 1) a p e r s o n ' s need f o r l o v e f o r and from o n e s e l f , o t h e r s , and God; 2) a p e r s o n ' s need t o f i n d meaning i n one's l i f e and f o r purpose and hope i n one's f u t u r e ; and 3) a p e r s o n ' s need f o r f o r g i v e n e s s from and f o r o n e s e l f , o t h e r s , and God ( P i l e s , 1990) . Thus, a need i s e m o t i o n a l o r p s y c h o l o g i c a l when i t i s between t h e i n d i v i d u a l and o t h e r s , and a need i s s p i r i t u a l when i t i s between t h e i n d i v i d u a l and h i s o r h e r God. ( P i l e s , 1990) . "While p s y c h o l o g y can h e l p p e o p l e u n d e r s t a n d t h e i r environment and i n t e r p e r s o n a l r e l a t i o n s h i p s w i t h i n t h a t e nvironment, 159 s p i r i t u a l i t y can h e l p p e o p l e u n d e r s t a n d t h e meaning o f t h e i r l i v e s " (Brooke, 1987, p.194). W h i l e i t i s e a s i e r and perhaps more c o m f o r t a b l e t o r e c o g n i z e p h y s i c a l , s o c i a l , and p s y c h o l o g i c a l needs and seek ways t o meet them, i t i s l e s s so f o r s p i r i t u a l needs. I n most s i t u a t i o n s , e v e r y t h i n g p o s s i b l e p h y s i c a l l y i s done f o r t h e d y i n g p a t i e n t . However, s p i r i t u a l needs a r e an o f t e n o v e r l o o k e d a r e a o f c o n c e r n because t h e y get c o n f u s e d w i t h r e l i g i o u s c o n c e r n s . H e a l t h p r o f e s s i o n a l s can g e t caught up i n o f f e r i n g o n l y m e d i c i n e r a t h e r t h a n b e i n g open t o s p i r i t u a l c o n c e r n s . Many m e n t a l h e a l t h p r o f e s s i o n a l s w i l l d e l i b e r a t e l y a v o i d d i s c u s s i o n o f s p i r i t u a l c o n c e r n s because o f t h e i r f e a r t h a t r e f e r e n c e t o God o r r e l i g i o n may enhance n e u r o s i s i n p s y c h i a t r i c c l i e n t s ( P i l e s , 1990). P i l e s (1990) a l s o r e p o r t s on s p i r i t u a l needs not b e i n g met because o f l a c k o f t i m e , f e a r t h a t t h e t o p i c i s s o c i a l l y u n a c c e p t a b l e f o r d i s c u s s i o n , o r because s t a f f t h e m s e l v e s may be s e e k i n g answers t o s p i r i t u a l q u e s t i o n s . However, i t i s i m p o r t a n t f o r t h e h e a l t h c a r e p r o f e s s i o n a l t o be w i l l i n g t o a d d r e s s t h e i n n e r s p i r i t u a l e x p e r i e n c e s o f t h e i r p a t i e n t s , e s p e c i a l l y t h o s e t h a t may be d y i n g . Need f o r change might i n d i c a t e t h a t more e d u c a t i o n i s needed t o p r o v i d e i n t e g r a t e d knowledge t h a t p u t s s p i r i t u a l i t y i n t h e c o n t e x t o f t o t a l c a r e r a t h e r t h a n s e t t i n g i t a p a r t as t h e r e s p o n s i b i l i t y o f p a s t o r a l c a r e . E f f e c t i v e s p i r i t u a l i n t e r v e n t i o n can be a c c o m p l i s h e d i n 160 a number o f ways i n c l u d i n g one-on-one i n t e r a c t i o n and group approaches. C a r s o n (1980) s u g g e s t s t h a t t h e t h e r a p e u t i c use of s e l f w i l l h e l p a n o t h e r p e r s o n move t o a h i g h e r l e v e l o f f u n c t i o n i n g . She d e f i n e s t h i s as a form o f l o v e t h a t i s e x p r e s s e d as an a c t o f w i l l and not as emotion, such as by p u r p o s e f u l l i s t e n i n g , empathy, commitment, and by s h a r i n g p e r s o n a l s t r e n g t h s and t a l e n t s . The s p i r i t u a l d i m e n s i o n t r a n s c e n d s and u n i f i e s t h e b i o l o g i c a l , p s y c h o l o g i c a l , and c u l t u r a l d i m e n s i o n s , and g i v e s t h e p e r s o n a sense o f wholeness t h a t i s t h r e a t e n e d by i l l n e s s , l o s s , and c o n t i n u o u s changes a s s o c i a t e d w i t h a g i n g (Brooke, 1987). Hester (1984) suggests t h a t i f we f o s t e r t h e f o l l o w i n g f o u r v a l u e s we w i l l be i n r e a d i n e s s t o promote s p i r i t u a l i t y . The f i r s t i s a h e a l t h y sense o f s e l f . T h i s can be done by becoming aware o f one's g i f t s , a c k n o w l e d g i n g one's l i m i t s , c a r i n g f o r one's h e a l t h , o and d e v e l o p i n g a l i f e s t y l e t h a t i n v o l v e s r e l a x a t i o n , r e c r e a t i o n , and q u i e t r e f l e c t i o n . T h i s w i l l h e l p b a l a n c e t h e demanding l i f e o f w o r k i n g i n a h o s p i t a l s e t t i n g . The second v a l u e i s a d e s i r e t o be i n one's j o b . " P e r i o d i c assessment o f jo b s a t i s f a c t i o n and sense o f m i s s i o n can p r o v i d e a p r e c i o u s s o u r c e o f s t r e n g t h and energy i n t h e d i f f i c u l t t i m e s " ( H e s t e r , 1984, p. 44) . The t h i r d v a l u e i s a sense o f i n t e r d e p e n d e n c e i n m i n i s t r y . T h i s can be a s s e s s e d by a p p r e c i a t i o n o f c o - w o r k e r s , by i d e n t i f y i n g and a c k n o w l e d g i n g o t h e r ' s g i f t s and t a l e n t s , by f o s t e r i n g s h a r i n g f o r t h e good of t h e community and t o add t o 161 t h e c r e a t i v e energy o f t h e o r g a n i z a t i o n . The f o u r t h v a l u e i s a c o n c e r n f o r q u a l i t y o f l i f e . I n t h e m i d s t o f t h e m e d i c a l t e c h n o l o g y and m e d i c i n e s , can we o f f e r p e r s o n a l p r e s e n c e and compassion. H e s t e r (1984) a s s e r t s t h a t i f we have r e f l e c t e d on t h e s e v a l u e s and a c t e d on them we can be open t o a d d r e s s t h e s p i r i t u a l needs o f o t h e r s . C a r s o n (1980) a l s o promotes t h e use o f r e g u l a r group p r a y e r t o meet t h e s p i r i t u a l needs o f c h r o n i c p s y c h i a t r i c p a t i e n t s . By t h i s method, t h e p a t i e n t l e a r n s t o v e r b a l i z e needs and f e e l i n g s , and moreover, p r a y i n g i n a group a l l o w s a l l t h e p a r t i c i p a n t s t o s h a r e i n each o t h e r ' s needs, j o y s , and s o r r o w s , and t o be s u p p o r t i v e and l o v i n g t o one a n o t h e r . She s u g g e s t s t h a t p r a y i n g a l s o enhances h o p e f u l n e s s by r e d u c i n g t h e sense o f b e i n g a l o n e and abandoned. I t a l s o r a i s e s awareness o f t h e o b l i g a t i o n o f h e a l t h p r o f e s s i o n a l s t o meet t h e s p i r i t u a l needs of p a t i e n t s . F u r t h e r , t h e r e s u l t s o f t h e s t u d y i n d i c a t e t h a t t h e needs o f t h e c a r e g i v e r s a r e not b e i n g met. I n p a r t i c u l a r t h e r e s u l t s s u g g e s t t h e need f o r an i n s t i t u t i o n a l mechanism t o s u p p o r t t h e c a r e g i v e r s . Most r e s p o n d e n t s d i d not f e e l t h a t t h e r e was a n y p l a c e f o r them t o go f o r s u p p o r t , and i f t h e r e was, t h e y d i d not know about i t . The i n s t i t u t i o n needs t o e i t h e r p u t a s u p p o r t mechanism i n p l a c e , o r i n f o r m i t s s t a f f o f what i s a v a i l a b l e . There c o u l d be a s u p p o r t i v e component t o ward rounds, k a r d e x rounds, e t c . , o r i n f o r m a t i o n on s u p p o r t 162 a v a i l a b l e may be added t o t h e o r i e n t a t i o n o f new employees. T h i s would demonstrate t o s t a f f members t h a t t h e o r g a n i z a t i o n t h e y worked f o r i s c o n c e r n e d about t h e p e r s o n a l w e l l - b e i n g o f i t s employees, would i n c r e a s e m o r a l e , p r o d u c t i v i t y and m o t i v a t i o n f o r t h e j o b . Most p a r t i c u l a r l y some d e b r i e f i n g p r o c e s s needs t o be implemented a f t e r a d e a t h has o c c u r r e d , e s p e c i a l l y a f t e r sudden o r u n e x p e c t e d d e a t h . Working w i t h p s y c h i a t r i c e l d e r l y p a t i e n t s i s , i n i t s e l f , a v e r y s t r e s s f u l j o b ; w o r k i n g w i t h p s y c h i a t r i c e l d e r l y who are d y i n g i s even more s t r e s s f u l . I t needs t o be remembered t h a t h e a l t h c a r e p r o f e s s i o n a l s who work w i t h d y i n g p e o p l e a r e f i r s t and f o r e m o s t p e o p l e who have needs, m o t i v a t i o n s , and s t r e s s . A l l t o o o f t e n i n our a t t e m p t s t o improve t h e c a r e o f t h e t e r m i n a l l y i l l we have n e g a t e d o r n e g l e c t e d t h e d i f f i c u l t i e s e x p e r i e n c e d by s t a f f w o r k i n g w i t h t h e s e p e o p l e . "The metamessage i s : I t ' s t h e p a t i e n t s who a r e s i c k and need h e l p . We, t h e s t a f f , a r e h e a l t h y and w e l l - i n t e g r a t e d and can cope c h e e r f u l l y , w i t h our d a i l y e xposure t o d i s e a s e , d i s f i g u r e m e n t and d e a t h . I n f a c t , our v e r y c h o i c e o f a p r o f e s s i o n shows how h e a l t h y and competent we a r e " (Vachon, 1978, p.113) . Many e n t e r t h e i r p r o f e s s i o n t o work w i t h d y i n g p a t i e n t s w i t h h i d d e n agendas and unmet needs. Many p e o p l e d e a l w i t h t h e s t r e s s by i g n o r i n g and d e n y i n g i t . S h a r i n g t h e s t r e s s w i t h 163 o t h e r s would b r i n g i t t o t h e f o r e f r o n t . O t h e r s may f e e l t h a t t h e y j u s t have t o a c c e p t t h e s t r e s s as p a r t o f t h e j o b . However, i f s t r e s s i s not m a i n t a i n e d a t p o s i t i v e l e v e l s i t can l e a d t o p e r s o n a l and p r o f e s s i o n a l n e g a t i v e b e h a v i o u r . I t i s t h e r e f o r e i m p o r t a n t f o r s t a f f members t o p r o v i d e s u p p o r t t o each o t h e r . A c c o r d i n g t o c u r r e n t s t r e s s t h e o r y , i n d i v i d u a l s have a f i n i t e amount o f energy f o r a d a p t i n g t o s t r e s s f u l s i t u a t i o n s and, u n l e s s t h i s energy i s r e p l e n i s h e d r e g u l a r l y , t h e s u p p l y becomes e x h a u s t e d (Vachon, 1983) . Throughout t h e m e d i c a l c a r e system, t h e r e a r e many s o u r c e s o f s t r e s s and s t r e s s f u l s i t u a t i o n s . Those who work w i t h t h e d y i n g a r e p a r t i c u l a r y a t r i s k o f d e p l e t i n g t h e energy t h e y have t o g i v e , because o f t h e tremendous e m o t i o n a l i n v e s t m e n t such work e n t a i l s . There a r e a number o f f a c t o r s i n h o s p i c e i t s e l f t h a t f o s t e r development o f u n f a v o u r a b l e s t r e s s r e a c t i o n s . The h e a l t h c a r e p r o f e s s i o n a l w o r k i n g w i t h d y i n g p a t i e n t s d a y - i n and day-out i s c o n s t a n t l y c o n f r o n t e d w i t h h i s o r h e r own m o r t a l i t y . These u n r e s o l v e d i s s u e s can b r i n g on a number o f s t r e s s r e a c t i o n s . As w e l l , i t might be s a i d t h a t many h e a l t h c a r e p r o f e s s i o n a l s who work w i t h d y i n g p e o p l e may adopt an u n r e a l i s t i c v iew o f what can be a c c o m p l i s h e d f o r t h e t e r m i n a l l y i l l , and when t h e s e e x p e c t a t i o n s a r e not i n a c c o r d a n c e w i t h r e a l i t y , f r u s t r a t i o n , d i s a p p o i n t m e n t and d i s t r e s s can d e v e l o p . The n a t u r e o f h o s p i c e c a r e i t s e l f does 164 not a l l o w s t a f f t o use t h e u s u a l d e f e n s e mechanisms i n d e a l i n g w i t h d e a t h and d y i n g . "[The work] i s c h a r a c t e r i z e d by a h i g h degree o f p e r s o n a l a t t e n t i o n and e m o t i o n a l i n v o l v e m e n t , l a c k o f s t r i c t r o l e d e f i n i n t i o n s f o r team members, and an emphasis upon f l e x i b l e and i n n o v a t i v e r e s p o n s e s t o s i t u a t i o n s " (Zimmerman, 1986, p.120). These a s p e c t s combined w i t h t h e u s u a l s t r e s s - p r o v o k i n g a s p e c t s o f m e d i c a l c a r e and c a r e o f t h e m e n t a l l y i l l make h o s p i c e p e r s o n n e l v u l n e r a b l e t o s t a f f s t r e s s . S t r e s s can be m a n i f e s t e d i n a number o f ways. F o r t h e i n d i v i d u a l member i t can be m a n i f e s t e d i n symptoms o f a n x i e t y , d e p r e s s i o n , s l e e p l e s s n e s s , a l c o h o l and d r u g abuse, l o s s o f a p p e t i t e , o r d i f f i c u l t y w i t h i n t e r p e r s o n a l r e l a t i o n s h i p s . Once s t a f f s t r e s s o c c u r s , i t t e n d s t o be i n v a s i v e and c o n t a g i o u s . S t a f f s t r e s s may be e x p r e s s e d i n terms o f s t a f f c o n f l i c t , p a r t i c u l a r l y i n h o s t i l i t y o r s c a p e g o a t i n g towards o t h e r members o f t h e team. I t may a l s o be m a n i f e s t e d i n u n e x p r e s s e d c o n f l i c t , w h i c h may l e a d t o d e t e r i o r a t i o n i n team f u n c t i o n i n g and t h u s , l e v e l o f p a t i e n t c a r e . T h e r e f o r e , we need t o s e r i o u s l y q u e s t i o n t h e a s s u m p t i o n t h a t h e a l t h c a r e p r o f e s s i o n a l s a r e immune from p a i n and s t r e s s by v i r t u e o f t h e i r p r o f e s s i o n , not o n l y f o r p e r s o n a l h e a l t h r e a s o n s as w e l l as f o r t h e sake o f p r o f e s s i o n a l i d e n t i t y . S t a f f s t r e s s can be d e a l t w i t h i n a number o f ways, and o f c o u r s e , t h e b e s t way i s t o t a k e s t e p s t o p r e v e n t i t s 165 s e r i o u s e f f e c t s from d e v e l o p i n g . Foremost, s t a f f members must have w e l l - i n t e g r a t e d s o c i a l s u p p o r t systems b o t h w i t h i n and w i t h o u t t h e p a t i e n t c a r e s e t t i n g t o o f f s e t t h e e m o t i o n a l l y d r a i n i n g n a t u r e o f h o s p i c e work. A n o t h e r e f f e c t i v e way t o d e c r e a s e s t a f f s t r e s s i s t h r o u g h t h e use o f a w e l l - o r g a n i z e d i n t e r d i s c i p l i n a r y team approach t o t h e c a r e o f p a t i e n t s . Communication between s t a f f members i s enhanced, r e s p o n s i b i l i t y i s more e f f e c t i v e l y s h a r e d , and no one f e e l s t o t a l l y a l o n e i n c a r i n g f o r t h e p a t i e n t . I t needs t o be emphasized t o each member o f t h e team t h a t he o r she does not i n d i v i d u a l l y need t o p r o v i d e a l l a s p e c t s o f c a r e t o each p a t i e n t . I t i s i m p o r t a n t t h a t each h o s p i c e program d e v e l o p i t s own mechanisms f o r r e c o g n i z i n g and r e a c t i n g t o s t r e s s t h a t can d e v e l o p w i t h i n t h e team. T h i s r e s p o n s e w i l l have t o be i n d i v i d u a l i z e d but c o u l d t a k e t h e form o f i n f o r m a l o r f o r m a l c o u n s e l l i n g , m o d i f i c a t i o n s i n assignment, r o u t i n e , o r s c h e d u l e , t o d e v e l o p i n g s p e c i a l programs such as e x p e r i e n t i a l workshops f o r s t a f f s u p p o r t . S t a f f s u p p o r t groups can be d e v e l o p e d w i t h i n u n i t s o r a c r o s s u n i t s . I n terms o f f a m i l y needs, l e s s t h a n h a l f o f t h e r e s p o n d e n t s i n d i c a t e d t h a t t h e y were b e i n g met and o v e r two-t h i r d s f e l t t h a t t h e r e was a need f o r change i n t h i s p r a c t i c e . The i s s u e o f m e e t i n g f a m i l y needs i s p r o b l e m a t i c f o r a number of r e a s o n s . The s i t u a t i o n a t R i v e r v i e w H o s p i t a l i s u n l i k e t h e 1 6 6 s i t u a t i o n i n an a c u t e c a r e f a c i l i t y i n r e s p e c t t o t h e a v a i l a b i l i t y o f t h e f a m i l y . I n a l a r g e number o f c a s e s , i t i s not known whether t h e p a t i e n t has any f a m i l y . O f t e n f a m i l y members l i v e i n o t h e r p r o v i n c e s o r o t h e r c o u n t r i e s . M e n t a l i l l n e s s i n t h e f a m i l y i s v e r y d i s r u p t i v e t o t h e f u n c t i o n i n g o f t h a t u n i t . I n some s i t u a t i o n s , t h e f a m i l i e s were t o r n a p a r t because o f t h e me n t a l i l l n e s s w h i l e t h e c h i l d r e n were v e r y young. Many o f t h e s e f a m i l y members f e e l g u i l t , anger, and even h o s t i l i t y towards t h e spouse o r p a r e n t who c o u l d not p r o v i d e f o r them. Sometimes t h e s e f a m i l y members w i l l make an attempt t o r e c o n n e c t but t h e y may be c o n f r o n t e d by t h e f a c t t h a t t h e i r l o v e d one does not r e c o g n i z e them. A l s o , i t i s d i f f i c u l t f o r f a m i l y members t o e n t e r t h e b l e a k l i v i n g e n vironment o f t h e i r r e l a t i v e . When t h e c o s t o f v i s i t i n g a r e l a t i v e i n t h e i n s t i t u t i o n becomes g r e a t e r t h a n t h e b e n e f i t , t h e f a m i l y r e a s s e s s e s i t s p r i o r i t i e s and o f t e n t i m e s d e c i d e s t o l i m i t t h e f r e q u e n c y and d u r a t i o n o f i t s v i s i t s o r c o n t a c t s . Some s i t u a t i o n s a r i s e when i t i s i m p o s s i b l e t o know who t h e f a m i l y may be. F o r example, on t h e men's ward t h e r e a r e a number o f men who were a d m i t t e d from t h e ' s t r e e t ' because o f s e v e r e a l c o h o l - r e l a t e d dementia. Sometimes t h e l o n g and s h o r t - t e r m memory o f t h e s e p a t i e n t s has been i m p a i r e d t o t h e p o i n t t h a t t h e y cannot remember a n y t h i n g about t h e i r l i v e s , not even t h e i r names. One s o c i a l worker s u g g e s t e d t h a t t h e m e e t i n g o f t h e 167 f a m i l y needs r e a l l y depended on t h e i n v o l v e m e n t o f s e n s i t i v e s t a f f members. I n a l l f a i r n e s s , i t i s d i f f i c u l t t o meet t h e needs o f t h e f a m i l y . S t a f f members a r e aware t h a t f a m i l y i s not i n v o l v e d , and t h e y may come t o r e s e n t t h e f a c t t h a t t h e p a t i e n t s ' e n t i r e e m o t i o n a l and s o c i a l s u p p o r t must come from them. I n a sense, t h e s t a f f members o f t e n become t h e s u r r o g a t e f a m i l y f o r t h e p a t i e n t . I n t h i s r e s p e c t , t h e i r r o l e i s v e r y d i f f e r e n t t h a n i n an a c u t e h o s p i t a l where f a m i l y a v a i l a b i l i t y i s g r e a t e r . F o r many f a m i l i e s , t h e e x p e r i e n c e o f coming t o an i n s t i t u t i o n l i k e R i v e r v i e w H o s p i t a l i s so a n x i e t y - p r o v o k i n g t h a t i t may l e a d them t o r e a c t by c r i t i c i z i n g t h e c a r e t h a t t h e i r l o v e d one i s r e c e i v i n g . P h y s i c a l l y , R i v e r v i e w ' s b u i l d i n g s a r e o l d and not a t t r a c t i v e , t h e l o c k e d d o o r s a r e i n t i m i d a t i n g , and t h e c o n d i t i o n o f some o f t h e r e s i d e n t s can be q u i t e d i s t u r b i n g . P e o p l e ' s v i s i o n s become b l i n d e d by t h e c o s m e t i c i s s u e s and do not p e r c e i v e t h e q u a l i t y o f c a r e p r o v i d e d . I t t a k e s some ex p o s u r e t o t h i s s i t u a t i o n t o u n d e r s t a n d t h e q u a l i t y o f c a r e g i v e n . T h e r e f o r e , p erhaps a r e s p o n s e by t h e s t a f f may be t o not i n v o l v e f a m i l y because t h e i r j o b can be more e f f i c i e n t l y done w i t h o u t f a m i l y i n t e r f e r e n c e and c r i t i c i s m . I t i s a d i f f i c u l t b a l a n c e f o r t h e s t a f f t o keep, i e . n e e d i n g f a m i l y i n v o l v e m e n t f o r t h e e m o t i o n a l and s o c i a l good o f t h e p a t i e n t but a l s o n e e d i n g t o e f f i c i e n t l y c a r r y out a'demanding j o b t h a t i s o n l y rewarded by th e work t h a t g e t s done. The s o c i a l work department has 168 implemented a new p o l i c y where a l l f a m i l y members l i s t e d a r e t o be n o t i f i e d t o keep some o f t h e s e c o n n e c t i o n s a l i v e . The r e s u l t s f o r whether o f not work r o u t i n e would a l l o w s t a f f members t i m e t o work " p s y c h o l o g i c a l l y " w i t h t h e d y i n g p a t i e n t i n d i c a t e d t h a t v e r y few s t a f f f e l t t h a t i t was p o s s i b l e . S t a f f members do not f e e l t h a t t h e y have t h e t i m e o r t h e know-how t o work w i t h d y i n g p a t i e n t s , e s p e c i a l l y w i t h t h e more d i f f i c u l t c a s e s . There was some r e c o g n i t i o n t h a t e f f i c i e n c y i s rewarded, but not q u a l i t y t i m e w i t h t h e d y i n g p a t i e n t . H e a l t h c a r e w o r kers and p s y c h i a t r i s t s d i d not f e e l t h e i r r o u t i n e a l l o w e d s u f f i c i e n t t i m e f o r p a l l i a t i v e c a r e . H e a l t h c a r e w o r kers a r e kep t v e r y busy on t h e e x t e n d e d c a r e wards: t h e y a r e r e s p o n s i b l e f o r t h e a c t i v i t i e s o f d a i l y l i v i n g s u ch as b a t h i n g , d r e s s i n g , grooming, f e e d i n g , and t o i l e t i n g . I t may be s u r p r i s i n g t o note t h a t t h e p s y c h i a t r i s t s do not f e e l t h a t t h e y have t h e t i m e t o p r o v i d e " p s y c h o l o g i c a l " c a r e , s i n c e many would suggest t h a t i s i n d e e d t h e i r j o b . However, a t R i v e r v i e w H o s p i t a l t h e r e i s a d r a s t i c s h o r t a g e o f t h e s e p r o f e s s i o n a l s . One p s y c h i a t r i s t may have t o c o v e r s e v e r a l wards. T h i s has l i m i t e d t h e i r r o l e t o b e i n g c o n s u l t a n t s t o t h e team i n p r o v i d i n g e x p e r t knowledge on m e d i c a t i o n , s i d e - e f f e c t s , and i n t e r p r e t i n g t h e c l i e n t s ' b e h a v i o u r . The r o l e o f 'the p s y c h i a t r i s t a t R i v e r v i e w H o s p i t a l has become somewhat l i m i t e d and c i r c u m s c r i b e d . 169 S o c i a l w o r k ers as a n o t h e r p r o f e s s i o n a l group cannot p r o v i d e a l l t h e " p s y c h o l o g i c a l " c a r e . Some o f t h i s c a r e can be i n t e g r a t e d i n t o t h e i r a r e a o f p r a c t i c e . F o r i n s t a n c e , t h e s o c i a l w orker i s r e q u i r e d t o do a s o c i a l h i s t o r y assessment and t h i s c o u l d i n v o l v e w o r k i n g " p s y c h o l o g i c a l l y " w i t h c l i e n t s as t h e y g a t h e r i n f o r m a t i o n . However, as i s o f t e n t h e c a s e , c l i e n t s a r e p o o r h i s t o r i a n s because o f t h e i r c o n d i t i o n , so t h e s o c i a l w orker w i l l r e l y on o l d m e d i c a l c h a r t s , f a m i l y , e t c . A l a r g e p a r t o f t h e s o c i a l work r o u t i n e t h e n becomes f i l l i n g out forms, making r e p o r t s , and l i a s i n g w i t h f a m i l y and community s e r v i c e s . The r e c i p i e n t o f s o c i a l work s e r v i c e s i s more o f t e n t h a n not t h e f a m i l y r a t h e r t h a n t h e p a t i e n t . Over h a l f (54%) o f t h o s e t h a t answered s t a t e d t h a t t h e r e was a need f o r change i n r e l a t i o n t o p s y c h o l o g i c a l c a r e . However, t h e o n l y p r o f e s s i o n a l group t h a t responded w i t h i n t e r e s t t o t h e p r o s p e c t o f change were s o c i a l w o r k e r s , as t h e m a j o r i t y o f r e s p o n d e n t s who i n d i c a t e d t h a t change i n t h i s a r e a was needed were s o c i a l w o r k e r s . b) R o l e E x p e c t a t i o n s As has been d i s c u s s e d , t h e e x p e c t a t i o n s t h a t p r o f e s s i o n a l s have o f t h e m s e l v e s and o t h e r s w i l l a f f e c t team f u n c t i o n i n g and t h u s , q u a l i t y o f p a t i e n t c a r e . The a s s u m p t i o n u n d e r l y i n g t h e q u e s t i o n r e g a r d i n g r o l e s t e r e o t y p e s i s t h a t t h e s e s t e r e o t y p e s i n t e r f e r e w i t h communication, r o l e 170 e x p e c t a t i o n s , e t c . Over h a l f o f t h e r e s p o n d e n t s d i d a c t u a l l y p e r c e i v e t h a t t h e i r r o l e was b e i n g s t e r e o t y p e d . However, o n l y s o c i a l w o r k e r s and h e a l t h c a r e w o r kers t h o u g h t t h a t t h e r e was a need f o r change. T h i s might suggest t h a t t o some, b e i n g s t e r e o t y p e d i s not n e c e s s a r i l y a n e g a t i v e t h i n g , and t h a t i t c o u l d even be a p o s i t i v e t h i n g . F o r example, p h y s i c i a n s and p s y c h i a t r i s t s may f i n d s t e r e o t y p i n g advantageous because i t c o u l d i n c l u d e d e c i s i o n - m a k i n g power, e x p e r t knowledge, s t a t u s , e t c . H e a l t h c a r e workers and s o c i a l w o r k ers a r e not u s u a l l y s t e r e o t y p e d as f a v o u r a b l y by o t h e r s . I t would appear, t h e n , t h a t p r o f e s s i o n a l s w i t h l o w e r s t a t u s v i e w s t e r e o t y p i n g as n e g a t i v e , w h i l e more p r i v i l e g e d p r o f e s s i o n a l s a r e more p o s i t i v e o r a t l e a s t n e u t r a l about t h e i s s u e . S t e r e o t y p i n g f o r p a s t o r a l c a r e workers may be more a c c e p t a b l e because t h e i r r o l e i s t o some degree v e r y s p e c i a l i z e d . I n r e g a r d t o c a r r y i n g out t h e r e l i g i o u s n a t u r e o f t h e i r r o l e , t h e r e i s no c o n f l i c t w i t h o t h e r p r o f e s s i o n s . I n c o n t r a s t , n u r s e s and p s y c h o l o g i s t s t h i n k t h e y can c o m p e t e n t l y p e r f o r m s o c i a l work d u t i e s . S o c i a l workers and h e a l t h c a r e w o r kers p r o b a b l y p e r c e i v e t h a t s t e r e o t y p i n g d i m i n i s h e s r a t h e r t h a n enhances t h e i r r o l e . " I n w o r k i n g w i t h o t h e r s , i t i s e a s i e s t t o r e s p o n d t o p r o f e s s i o n a l s t e r e o t y p e s r a t h e r t h a n t o l e a r n what o t h e r p r o f e s s i o n a l s a c t u a l l y do" (Lowe & Herranen, 1982, p . 7 ) . The c h a l l e n g e t h e n , a c c o r d i n g t o Lowe & Herranen (1982), i s t o u n d e r s t a n d each p r o f e s s i o n a l ' s frame o f r e f e r e n c e so t h a t 171 r o l e s and f u n c t i o n s can remain f l e x i b l e . The r e s u l t s t o t h e q u e s t i o n r e g a r d i n g r o l e s t e r e o t y p e s complement t h e r e s u l t s on t h e p r o v i s i o n o f p s y c h o l o g i c a l c a r e t o t h e d y i n g p a t i e n t . I n b o t h i n s t a n c e s , t h e p r o f e s s i o n a l s who t h o u g h t t h e i r r o l e s were l i m i t i n g were t h e h e a l t h c a r e w o r k e r s and s o c i a l w o r k e r s . Perhaps t h e s e p r o f e s s i o n a l s f e l t l i m i t e d by t h e i r l a c k o f power i n t h a t t h e y would have t o o p e r a t e w i t h i n c i r c u m s c r i b e d r o l e s . I n t r a d i t i o n a l h e a l t h c a r e , p r o f e s s i o n a l and n o n p r o f e s s i o n a l r o l e s a r e w e l l d e f i n e d , and each d i s c i p l i n e u n d e r s t a n d s t h e l i m i t s o f i t s own b o u n d a r i e s . Economics, e d u c a t i o n , and p r o f e s s i o n a l s p e c i a l i z a t i o n have e n s u r e d t h a t no one h e a l t h c a r e p r o f e s s i o n a l can t r e a t t h e t o t a l p e r s o n . H e a l t h c a r e p r o f e s s i o n a l s t r e a t o n l y t h a t p o r t i o n o f t h e p e r s o n as e n v i s i o n e d o r d e s c r i b e d by t h e i r l i m i t e d p r o f e s s i o n a l scope o f p r a c t i c e . However, a major c h a r a c t e r i s t i c o f h o s p i c e / p a l l i a t i v e c a r e i s r o l e b l u r r i n g ( C o r r and C o r r , 1983) . I n o r d e r t o ens u r e t h a t q u a l i t y c a r e i s not fragmented, t h e r o l e s o f t h o s e p r o v i d i n g h o s p i c e c a r e t e n d t o o v e r l a p , e s p e c i a l l y w i t h home c a r e . F o r example, a n u r s e may f i n d h i m s e l f o r h e r s e l f i n a s i t u a t i o n where f a m i l y c o n c e r n s a r e r a i s e d and may have t o d e a l w i t h i t w i t h o u t b r i n g i n g i n t h e s o c i a l worker. C o n v e r s e l y , a s o c i a l worker may be r e q u e s t e d t o do some form o f p h y s i c a l c a r e . A l l s t a f f members not o n l y must know 172 e v e r y t h i n g t h a t i s h appening w i t h a p a t i e n t , b u t must be p r e p a r e d f o r and f l e x i b l e enough t o p r o v i d e a l m o s t any c a r e t h a t i s e t h i c a l l y p e r m i s s i b l e . I t cannot be a m a t t e r o f " T h i s i s my r o l e and you s t i c k t o y o u r s " . I t i s a m a t t e r o f c o o p e r a t i o n i n d e l i v e r y o f s k i l l s and a b i l i t i e s . I f t r u e c o o p e r a t i o n between h e a l t h p r o f e s s i o n a l s i s t o e x i s t , t h e n t h e y must work t o g e t h e r , s h a r e r e s p o n s i b i l i t i e s , and know when i t i s i m p o r t a n t t o r e l i n q u i s h t h e i r r o l e s i n t h e t r u e s p i r i t o f g i v i n g t h e i r b e s t t o p e o p l e . The p r e s e r v a t i o n o f t h e i n t e g r i t y o f a p e r s o n s ' l i f e may be dependent on p r o f e s s i o n a l s l o o k i n g beyond t h e p e r i p h e r y o f t h e i r " p r o f e s s i o n a l b l i n k e r s " and examine what s e r v i c e s a r e n e c e s s a r y t o e n s u r e q u a l i t y o f l i f e . The r e s u l t s o f t h i s s t u d y do not d e m o n s t r a t e how f l e x i b l e t h e s t a f f o f t h e G e r i a t r i c D i v i s i o n o f R i v e r v i e w H o s p i t a l a r e i n terms o f t h e i r r o l e i n w o r k i n g w i t h t h e d y i n g , o n l y t h a t i n g e n e r a l , r o l e s a r e p e r c e i v e d t o be s t e r e o t y p e d . T h e r e f o r e , i t i s i m p o s s i b l e t o c a l c u l a t e how much change would be n e c c e s s a r y t o accommodate f o r r o l e b l u r r i n g a t R i v e r v i e w H o s p i t a l . I n o r d e r t o p r e p a r e h e a l t h p r o f e s s i o n a l s t o assume t h e s e new r o l e s , i n n o v a t i v e e d u c a t i o n a l and t r a i n i n g programs must be d e v e l o p e d . As we d e v e l o p t h e s e new e d u c a t i o n a l programs, c a u t i o n must be e x e r c i s e d t o p r e v e n t t h e l i m i t a t i o n s and narrowness o f t h e concept o f ' s p e c i a l i z a t i o n ' from c r e e p i n g i n . 173 c) Teamwork The f i n d i n g s showed t h a t t h e m a j o r i t y (81%) o f t h o s e who responded f e l t t h a t t h e r e was teamwork a t R i v e r v i e w H o s p i t a l . However, t h i s f i n d i n g r e a l l y does not t e l l us what r e s p o n d e n t s t h o u g h t teamwork was. I t a l s o does not t e l l us how c o h e s i v e and h i g h - f u n c t i o n i n g o r a t what s t a g e o f development t h e "team" might be a t . Perhaps more i m p o r t a n t l y , when asked whether o r not t h e y p e r s o n a l l y worked as a member o f a team when w o r k i n g w i t h t h e d y i n g , fewer s t a f f members responded p o s i t i v e l y (70%) . So w h i l e most p e o p l e r e c o g n i z e d t h a t a team ap p r o a c h was i n p l a c e , fewer r e s p o n d e n t s a c t u a l l y f e l t p a r t o f a team when w o r k i n g w i t h d y i n g p a t i e n t s . T h i s may su g g e s t t h a t p e o p l e a r e w o r k i n g i n d e p e n d e n t l y when c a r i n g f o r t h e d y i n g , o r t h a t some members o f a team a r e not r e c o g n i z e d as c o n t r i b u t i n g p l a y e r s . F o r example, h e a l t h c a r e w o r kers a r e t h e o r e t i c a l l y a p a r t o f t h e "team" b u t a r e o f t e n l e f t out o f t h e p l a n n i n g p r o c e s s . I f t h e y do go t o a ward round, i t i s t o m a i n t a i n a l i m i t e d p r o f i l e . Added e v i d e n c e o f t h i s l a s t h y p o t h e s i s i s t h e f a c t t h a t i t i s t h e p r o f e s s i o n a l s w i t h l o w e r s t a t u s who do not f e e l t h a t t h e y work as p a r t o f a team. H e a l t h c a r e p r o f e s s i o n a l s who work w i t h d y i n g p e o p l e a t R i v e r v i e w H o s p i t a l need t o u n d e r s t a n d and d e v e l o p a s t r o n g commitment t o t h e concept o f teamwork. Care o f t h e d y i n g e l d e r l y a t R i v e r v i e w H o s p i t a l must be a team c o n c e r n . These p a t i e n t s may be i d e n t i f i e d as d i f f i c u l t t o manage o r may p r e s e n t u n i q u e p r o b l e m s , m e d i c a l l y , e t h i c a l l y , o r p s y c h o l o g i c a l l y . I f t h e s i t u a t i o n a r i s e s where each s t a f f member i s d e a l i n g w i t h t h e d y i n g i n d i v i d u a l d i f f e r e n t l y , i t may r e s u l t i n u n c l e a r e x p e c t a t i o n s f o r b o t h t h e p a t i e n t and s t a f f . B r i n g i n g t h i s t o t h e a t t e n t i o n o f a l a r g e r team h e l p s t o d e v e l o p a c o n s i s t e n t and j o i n t l y f o r m u l a t e d a pproach. However, teamwork t a k e s t i m e , e f f o r t , e v a l u a t i o n , and commitment. As was d i s c u s s e d i n C h a p t e r Two, teamwork i s a d e v e l o p m e n t a l p r o c e s s . I t i s i m p e r a t i v e t h a t t h e team spend t i m e e x p l i c i t l y examing how i t w i l l work, i e . , what i s e x p e c t e d o f t h e members, what p r i o r i t i e s w i l l be u p h e l d , how d e c i s i o n s w i l l be made, what t y p e s o f communication w i l l e x i s t , e t c . The same s t e p s t h a t t h e s t a f f a t R i v e r v i e w H o s p i t a l has t a k e n t o ensure t h a t teamwork e x i s t s when w o r k i n g w i t h t h e g e n e r a l p a t i e n t p o p u l a t i o n must a l s o be t a k e n t o en s u r e teamwork w i t h t h e d y i n g . T h i s team f u n c t i o n i n g and maintenance s h o u l d b e g i n w i t h s t r o n g p e r s o n a l and p r o f e s s i o n a l i d e n t i t y and u n d e r s t a n d i n g o f o t h e r s ' r o l e s , as p r e s e n t e d e a r l i e r . I t i s w i t h t h i s f o u n d a t i o n t h a t a group o f h e a l t h c a r e p r o f e s s i o n a l s w i t h s i m i l a r o b j e c t i v e s can work t o g e t h e r t o meet and exceed t h o s e o b j e c t i v e s . The c o m p o s i t i o n o f a team w o r k i n g w i t h d y i n g i n d i v i d u a l s and t h e i r f a m i l i e s w i l l 'vary from program t o program, however, u s u a l l y t h e r e a r e p a r t i c u l a r p r o f e s s i o n a l s who c o m p r i s e t h e 175 team. There s h o u l d be l i t t l e i n t h e way o f a h i e r a r c h i a l s t r u c t u r e f o r t h i s group. L e a d e r s h i p s h o u l d be s h a r e d so t h a t t h e p e r s o n w i t h t h e b e s t s k i l l s t o h a n d l e a s i t u a t i o n can t a k e t h e l e a d . T h i s way t h e s t a f f a v o i d s b u r n - o u t , c a r e can remain i n n o v a t i v e , and communication w i l l r emain a t an optimum. P h y s i c i a n s , n u r s e s , n u r s i n g a s s i s t a n t s , s o c i a l w o r k e r s , d i e t i c i a n s , p h a r m a c i s t s , p s y c h i a t r i s t s , p h y s i c a l and o c c u p a t i o n a l t h e r a p i s t s , c h a p l a i n s , and v o l u n t e e r s a l l can f u l f i l l a r o l e . As w e l l , speech t h e r a p i s t s , a r t t h e r a p i s t s , music t h e r a p i s t s , and r e c r e a t i o n a l t h e r a p i s t s can a l s o be h e l p f u l . The c o n t a c t o f o t h e r members o f t h e h o s p i t a l s t a f f s u ch as h o u s e k e e p i n g and maintenance p e r s o n n e l cannot be o v e r l o o k e d . F i n a l l y , t h e p a t i e n t and f a m i l y (as d e f i n e d by t h e d y i n g i n d i v i d u a l ) s h o u l d be t r e a t e d as b e i n g c e n t r a l t o t h e team. Team makeup w i l l depend on i n s t i t u t i o n a l c i r c u m s t a n c e s , program o b j e c t i v e s , and a v a i l a b l e r e s o u r c e s . C o n t i n u a l e v a l u a t i o n o f t h e e f f e c t i v e n e s s o f teams must be c a r r i e d o u t . " E f f e c t i v e n e s s " i m p l i e s t h a t more energy i s b e i n g f o c u s e d on a c c o m p l i s h i n g t h e team's t a s k s t h a n on m a i n t a i n i n g t h e group. The team's m o r a l e , member s a t i s f a c t i o n , and work p r o c e s s e s , i n c l u d i n g communication, d e c i s i o n - m a k i n g , r o l e e x p e c t a t i o n s , and t h e s u p p o r t i v e a s p e c t o f t h e team s h o u l d be r e v i e w e d . As w e l l , t h e team s h o u l d spend t i m e e v a l u a t i n g what p e r s o n a l and p r o f e s s i o n a l development needs members have and how t h e team can h e l p meet 176 them. F u r t h e r , each team needs t o come t o g r i p s w i t h how b e s t t o o p e r a t e w i t h i n t h e o r g a n i z a t i o n a l s t r u c t u r e . d) Exchange and Communication o f D i a g n o s t i c I n f o r m a t i o n Only a s m a l l m i n o r i t y (30%) o f r e s p o n d e n t s t h o u g h t t h a t p a t i e n t s were i n f o r m e d o f t h e i r impending d e a t h . A n o t h e r 35% o f t h e r e s p o n d e n t s s u g g e s t e d t h a t t h e p a t i e n t s were o n l y t o l d under c e r t a i n c o n d i t i o n s , such as i f t h e p a t i e n t ' s m e n t a l s t a b i l i t y were such t h a t t h e y c o u l d h a n d l e b e i n g t o l d . More a d m i t t e d t h a t t h e y may not be t o l d because o f t h e f e a r o f i n d u c i n g n e u r o t i c o r p s y c h o t i c b e h a v i o u r i n t h e i n d i v i d u a l , w h i c h t h e i n f o r m a n t would f e e l r e s p o n s i b l e f o r . Not one respondent t h o u g h t t h a t t h i s s i t u a t i o n s h o u l d be changed. H a l f o f t h e r e s p o n d e n t s d i d not t h i n k change was n e c e s s a r y , w h i l e t h e o t h e r h a l f o f t h e r e s p o n d e n t s t h o u g h t t h a t change s h o u l d depend on t h e s i t u a t i o n . These r e s u l t s c e r t a i n l y p o i n t t o t h e d i f f i c u l t e t h i c a l dilemmas i n h e r e n t i n t h e i s s u e o f whether o r not m e n t a l l y i l l p a t i e n t s s h o u l d be o r can be t o l d about impending d e a t h . These r e s u l t s a l s o c o n t r a d i c t t h e g e n e r a l agreement i n t h e l i t e r a t u r e t h a t i n almo s t a l l i n s t a n c e s t h e i n t e r e s t s o f t h e p a t i e n t and f a m i l y a r e b e s t s e r v e d when t h e p a t i e n t has some u n d e r s t a n d i n g o f h i s or h e r d i s e a s e and p r o g n o s i s . A l t h o u g h a few w r i t e r s q u e s t i o n t h e t h e r a p e u t i c v a l u e o f o p e n l y d i s c u s s i n g d e a t h w i t h p a t i e n t s , most a u t h o r s agree t h a t t e r m i n a l p a t i e n t s would 177 p r e f e r t o have t h e o p p o r t u n i t y t o d i s c u s s one o f t h e most i m p o r t a n t f a c t o f t h e i r l i v e s w i t h i n s t i t u t i o n a l p e r s o n n e l and l o v e d ones, and want some k i n d o f p e r s o n a l i z e d s u p p o r t i v e r e l a t i o n s h i p from them. T e r m i n a l p a t i e n t s a r e l i k e l y t o f e a r d e a t h , b u t want i n f o r m a t i o n c o n c e r n i n g when and how t h e y p r o b a b l y w i l l d i e . Mount (1978) and o t h e r s have g a t h e r e d d a t a i n d i c a t i n g t h a t most p a t i e n t s want t o know t h e i r d i a g n o s i s and p r o g n o s i s ; t h e same d a t a i n d i c a t e t h a t t h i s i s u s u a l l y not what happens. H o s p i t a l s t a f f a r e d e s c r i b e d as b e i n g u n w i l l i n g t o t e l l a p a t i e n t t h a t he o r she i s d y i n g . S t a f f t h e n cope w i t h t h e i r own f e a r s o f d e a t h by d e v e l o p i n g an i m p e r s o n a l a t t i t u d e , and s t r a t e g i e s t o f o r c e p a t i e n t s and f a m i l i e s i n t o b e h a v i o u r s w i t h w h i c h t h e c a r e t a k i n g s t a f f i s c o m f o r t a b l e . P a r t o f t h e r e a s o n why p a t i e n t s a t R i v e r v i e w H o s p i t a l a r e not b e i n g t o l d about impending d e a t h i s because t h e r e i s a g e n e r a l i z e d b e l i e f t h a t t h e p a t i e n t s do not u n d e r s t a n d t h e y a r e d y i n g when t h e y a r e t o l d . O b v i o u s l y , i f one b e l i e v e s a p e r s o n i s not g o i n g t o u n d e r s t a n d , t h e n one may not even attempt t o i n f o r m t h a t p e r s o n . The p h y s i c i a n and t h e p s y c h i a t r i s t who b e l i e v e d t h a t p a t i e n t s u n d e r s t o o d a l s o b e l i e v e d t h a t p a t i e n t s were t o l d about impending d e a t h . Many s t u d i e s have v e r i f i e d t h a t v e r y o f t e n t h e p a t i e n t senses t h e o u t l o o k l o n g b e f o r e b e i n g t o l d . " T e l l i n g " may t h e n not be t h e a c c u r a t e way t o d e s c r i b e t h i s exchange o f i n f o r m a t i o n (Zimmerman, 1986) . There a r e o b v i o u s d i f f e r e n c e s i n 178 p e r c e p t i o n o f t h e s i t u a t i o n between t h e p r o f e s s i o n a l g r o u p s . Most p r o f e s s i o n a l s s u r v e y e d b e l i e v e d t h a t e f f o r t s a r e made t o i n f o r m t h e f a m i l y about impending d e a t h . S t i l l , h e a l t h c a r e w o rkers and s o c i a l w o r k ers t h o u g h t t h e r e was a need f o r change. Perhaps t h e t y p e o f change t h e s e p r o f e s s i o n a l s wanted was t o see more f a m i l y i n v o l v e d i n t h e t r e a t m e n t p r o c e s s o r t h e d e c i s i o n - m a k i n g . Perhaps by change t h e s e two groups were r e f e r r i n g t o t h e a t t i t u d e s t h a t e x i s t r e g a r d i n g t h e p r e s e n c e o f f a m i l y . As was d i s c u s s e d p r e v i o u s l y , f a m i l y i n v o l v e m e n t can be l i m i t e d o r a t a d i s t a n c e , t h u s , i t may be e a s i e r and l e s s t h r e a t e n i n g f o r s t a f f members t o i n f o r m t h e f a m i l y o f a d y i n g p a t i e n t . P a t i e n t and f a m i l y u n d e r s t a n d i n g o f d i a g n o s i s and p r o g n o s i s i s an i m p o r t a n t , c o m p l i c a t e d , and c o n t r o v e r s i a l t o p i c . The i s s u e o f what t o t e l l t h e t e r m i n a l l y i l l p a t i e n t about h i s o r h e r d i a g n o s i s and p r o g n o s i s has r e c e i v e d a g r e a t d e a l o f a t t e n t i o n . O b v i o u s l y , t h e r e can be no u n i f o r m p o l i c y w i t h r e s p e c t t o t e l l i n g p a t i e n t s about t h e i r d i s e a s e and p r o g n o s i s , however, t h e r e a r e some g u i d e l i n e s t h a t can be f o l l o w e d f o r t e l l i n g t h e p a r t i c u l a r p a t i e n t s a t R i v e r v i e w H o s p i t a l who a r e t o l d . One must b e g i n by l i s t e n i n g and c o n t i n u e t o l i s t e n c a r e f u l l y . L i s t e n i n g i s i n many ways much more i m p o r t a n t t h a n t e l l i n g . I t i s o n l y by f i r s t l i s t e n i n g t h a t one can d e t e r m i n e what can and s h o u l d be t o l d . B o t h l i s t e n i n g and t e l l i n g o f t e n need t o t a k e p l a c e o v e r a p e r i o d o f t i m e a t m u l t i p l e v i s i t s . P a t i e n t s ' needs and c a p a c i t i e s f o r u n d e r s t a n d i n g change and e v o l v e so t h a t an o n g o i n g d i a l o g u e i s e s s e n t i a l . As w e l l , u n d e r s t a n d i n g i s not a c o n s i s t e n t p r o g r e s s i o n : a p a t i e n t may v a r y immensely from one day t o a n o t h e r i n what he o r she i s w i l l i n g t o a c c e p t o r a s s i m i l a t e . One must i n d i v i d u a l i z e on t h e b a s i s o f what i s h e a r d . Because o f t h e v a r i a b i l i t y and u n p r e d i c t a b i l i t y o f t h e d y i n g s i t u a t i o n , s t a f f must be k n o w l e d g e a b l e i n s k i l l s n e c e s s a r y f o r communicating w i t h d y i n g i n d i v i d u a l s , whether t h e y be withdrawn, h o s t i l e , o r open t o c o n v e r s a t i o n . Abscence o f such communication i s perhaps t h e g r e a t e s t b a r r i e r t o good p a l l i a t i v e c a r e . One s h o u l d be a l e r t , b o t h i n l i s t e n i n g and i n t e l l i n g , t o n o n v e r b a l communication. F o r most p a t i e n t s , t h e t r u t h p r e s e n t e d k i n d l y and a t an a p p r o p r i a t e t i m e i n a s u i t a b l e s e t t i n g can open c h a n n e l s f o r making d y i n g a l i t t l e more c o m f o r t a b l e and a l i t t l e g e n t l e r . U n f o r t u n a t e l y , t h e r e i s no way t o be c e r t a i n t h a t , f o r a p a r t i c u l a r p a t i e n t , one has s e l e c t e d t h e b e s t o f a l l p o s s i b l e a l t e r n a t i v e s . F i n a l l y , c o o r d i n a t i o n and s h a r i n g o f i n f o r m a t i o n between members o f t h e h e a l t h team i s v i t a l , e s p e c i a l l y when we c o n s i d e r t h a t p a t i e n t s v a r y i n t h e i r a b i l i t y and w i l l i n g n e s s t o r e l a t e and s h a r e w i t h d i f f e r e n t i n d i v i d u a l s . Members o f t h e s t a f f w i l l more t h a n l i k e l y be t h e r e c i p i e n t s o f t h e i n s t i t u t i o n a l i z e d p a t i e n t ' s c o n f i d e n c e s . One o f t h e v i r t u e s o f teamwork i s t h a t i t p r o v i d e s a number o f o p t i o n s t o 180 the patient i n t h i s respect. Communication among a l l members of the health team i n h i b i t s deception, avoidance and inappropriate remarks to patients, as well as the f r u s t r a t i o n that can develop when team members do not understand what i s being done and the reasons for i t . Patient and family not only must have input i n making the decision but a clear-cut understanding of what decision has been made and the reasons for i t . e) Discussion of Qualitative Ananlysis The q u a l i t a t i v e aspects of the findings regarding the question about whether a l l that can be done for the dying patient i s being done uncovers some concern regarding the care for dying people i n the G e r i a t r i c D i v i s i o n of Riverview Hospital. Emotional and s p i r i t u a l needs of the patients and famil i e s , i t i s f e l t , are not being addressed adequately. The respondents also mentioned a lack of support for the caregivers themselves. There were many valuable suggestions offered to deal with these issues, such as the provision of more education and t r a i n i n g , and the creation of support groups. Aside from the p r a c t i c a l issues, the most i n t e r e s t i n g responses made reference to recognition of very r e a l e t h i c a l issues that have to be resolved. A f i r s t concern addresses the issue of program implementation and the question of which 181 t y p e o f program would be b e s t f o r t h e c l i e n t s . The c u r r e n t p r a c t i c e c o n s i s t s o f moving d y i n g p a t i e n t s from t h e i r home-ward t o N o r t h Lawn when t h e y become t o o i l l o r r e a c h end-s t a g e . N o r t h Lawn i s a u n i t d e s i g n a t e d as a m e d i c a l / s u r g i c a l a r e a f o r p h y s i c a l l y i l l p a t i e n t s . There a r e v e r y v a l i d c o n c e r n s r e g a r d i n g r e l o c a t i o n s t r e s s and t r a n s f e r trauma, and r e g a r d i n g t h e e f f e c t s t h i s p r a c t i c e has on t h e d y i n g p r o c e s s . R e l o c a t i o n s t r e s s and t r a n s f e r trauma a r e c o n d i t i o n s t h a t a r e th o u g h t t o r e s u l t when t h e e l d e r l y a r e moved from t h e i r accustomed en v i r o n m e n t . " R e l o c a t i o n - t h a t i s , mass t r a n s f e r from an o l d b u i l d i n g t o a new one - i m p l i e s d i s r u p t i o n o f s o c i a l n e t w o r k s , as w e l l as c o n f u s i o n g e n e r a t e d by new s p a t i a l a r rangements" (Bennett, 1984, p.231). I n t h e R i v e r v i e w H o s p i t a l s i t u a t i o n , d i s r u p t i o n o f networks o c c u r s because ward mates and s t a f f do not f o l l o w t h e p a t i e n t from t h e o l d b u i l d i n g t o t h e new one. I t i s p a r t i c u l a r l y i m p o r t a n t f o r t h e adj u s t m e n t o f m e n t a l l y d i s t u r b e d p e o p l e t o i n s t i t u t i o n a l l i f e t h a t r o u t i n e s be f a m i l i a r and p r e d i c t a b l e , and t h a t t h e r e be c o n t i n u i t y i n t h e p e o p l e s u r r o u n d i n g them. As was d i s c u s s e d e a r l i e r , t h e s o c i a l needs o f t h e p a t i e n t s a r e f o r t h e most p a r t met by s t a f f . When t h e s e c o n t a c t s a r e s e v e r e d , and t h e p a t i e n t i s c o n f r o n t e d w i t h new s t a f f i n g p a t t e r n s , i t can produce n e g a t i v e e f f e c t s such as d e b i l i t a t i n g s t r e s s and c o g n i t i v e c o n f u s i o n . The q u e s t i o n i s whether t h i s t r a n s f e r has t h e e f f e c t o f 182 s p e e d i n g up t h e p r o c e s s o f d y i n g , and i f so, whether we can f i n d a p p r o p r i a t e means o f t r e a t i n g and c a r i n g f o r t h e d y i n g p a t i e n t s on t h e i r home-wards s u r r o u n d e d by f a m i l i a r s t a f f and s t a f f i n g r o u t i n e s . A n o t h e r p o s s i b i l i t y would be t o b e t t e r p r e p a r e a p a t i e n t f o r a move t o reduce t h e p s y c h o l o g i c a l , e m o t i o n a l , and s o c i a l s t r e s s e s a t t a c h e d t o t h e move. A g u i d i n g p r i n c i p l e t h a t can be used f o r p r a c t i c e i s t h e p e r s o n - i n - e n v i r o n m e n t paradigm. The u n d e r l y i n g p r e m i s e i s t h a t b e h a v i o u r i s more t h a n a p r o d u c t o f i n t r a p s y c h i c f u n c t i o n i n g o r t h e s i m p l e p r o d u c t of t h e e x t e r n a l e n v i r o n m e n t . R a t h e r a s y n t h e s i s between t h e i n d i v i d u a l and t h e e nvironment works t o g e t h e r i n s h a p i n g and i n f l u e n c i n g b e h a v i o u r . Environment s h o u l d be c o n s i d e r e d t o i n c l u d e b o t h i n t e r n a l and e x t e r n a l f a c t o r s and i s b o t h s o c i a l and p h y s i c a l . T h e r e f o r e , i t can be s a i d t h a t h e a l t h i s a q u a l i t a t i v e e x p r e s s i o n o f t h e i n t e r a c t i o n among e n v i r o n m e n t s . B o t h p h y s i c a l and s o c i a l f a c t o r s need t o be a p p r a i s e d t o d e t e r m i n e i n what ways an i n d i v i d u a l ' s h e a l t h can be enhanced, and t h e emphasis s h o u l d be on i m p r o v i n g t h e q u a l i t y o f t h e i n t e r n a l - e x t e r n a l i n t e r a c t i o n . P a l l i a t i v e c a r e i s s t i l l i n i t s e a r l y s t a g e s o f development and not e v e r y t h i n g has y e t been l e a r n e d about t h e b e s t manner and method o f d e l i v e r i n g s e r v i c e s . N o t h i n g s h o u l d be done t h a t might i n a d v e r t e n t l y f o r e c l o s e any p o t e n t i a l l y v a l u a b l e new o p t i o n s o r t h a t might a c c i d e n t a l l y dampen t h e 183 s p i r i t o f i n n o v a t i o n . . A v e r y c e n t r a l p o l i c y q u e s t i o n t h a t must be a d d r e s s e d by t h e a d m i n i s t r a t i o n a t R i v e r v i e w H o s p i t a l r e g a r d i n g t h e development o f a h o s p i c e / p a l l i a t i v e program, i s w h i c h p a t i e n t s s h o u l d be s e r v e d by such a program. F o r example, s h o u l d a program s e r v e a l l d y i n g p a t i e n t s o r s h o u l d t h e program s i m p l y s e r v e as a back up program f o r p a t i e n t s w i t h a p a r t i c u l a r d i a g n o s i s . I f i t i s a g r e e d t h a t t h e p a l l i a t i v e c a r e program s h o u l d be a s p e c i a l i z e d u n i t , t h e model t h a t w i l l d e v e l o p w i l l be v e r y d i f f e r e n t . O b v i o u s l y , t h i s u n i t w i l l be a d e s i g n a t e d a r e a t h a t i s c a l l e d i n t o p l a y when t h e s t a n d a r d programs o f c a r e a r e not c a p a b l e o f h a n d l i n g t h e c h a l l e n g e p r e s e n t e d by t h e d y i n g p r o c e s s . There would most l i k e l y e x i s t a s p e c i a l i z e d team o f p e r s o n n e l who would o n l y work on t h i s u n i t . There would a l s o p r o b a b l y be e x t e n s i v e s e r v i c e s a v a i l a b l e i n t h i s s p e c i a l i z e d u n i t . The u n i t c o u l d a l s o s e r v e as a c e n t r e f o r r e s e a r c h and advanced t e a c h i n g . The main d i s a d v a n t a g e o f t h i s model, e s p e c i a l l y f o r t h e c o n t e x t o f R i v e r v i e w H o s p i t a l as has been o u t l i n e d , i s t h e need t o r e l o c a t e l o n g - t i m e r e s i d e n t s o f home-wards t o an u n f a m i l i a r and u n p r e d i c t a b l e s u r r o u n d i n g . I f , on t h e o t h e r hand, i t i s a g r e e d t h a t p a l l i a t i v e c a r e s h o u l d be p r o v i d e d on t h e home-wards t o a l l d y i n g p a t i e n t s , t h e n a d i f f e r e n t model 'of c a r e w i l l d e v e l o p . I n t h i s model, t h e r e w i l l be a much g r e a t e r number of programs, s p r e a d more 184 broadly throughout the h o s p i t a l . They would be more general i n nature and less intensely s p e c i a l i z e d . The s t a f f members would receive a more general t r a i n i n g and would probably not l i m i t t h e i r professional a c t i v i t i e s to hospice patients. They may not even consider themselves s p e c i a l i s t s i n the care of the dying, but rather see themselves as providing good medical or nursing care to a somewhat spe c i a l population. In these more general programs, less research would most c e r t a i n l y be conducted, and less advanced education and t r a i n i n g would probably be c a r r i e d out. Further, i f the program i s broadened to care for patients dying of various conditions, and not a s p e c i f i c one such as for cancer patients, which 90 -95% of hospice programs t y p i c a l l y serve, then again a d i f f e r e n t model w i l l emerge. It w i l l be more d i f f u s e i n purpose and w i l l be less c l e a r l y v i s i b l e to the community, including s t a f f members. It w i l l have to develop a broader range of services and c a p a b i l i t i e s to meet the va r i e t y of needs that w i l l a r i s e . The findings suggest that a "philosophy" approach i s preferable to a structured program. Rather than having a s p e c i f i c unit, designated beds, or a mobile team, some respondents have suggested to incorporate the philosophy of h o s p i c e / p a l l i a t i v e care into the e x i s t i n g patient care services. Perhaps t h i s i s a preferred approach because i t does not require s t r u c t u r a l change to the system, but simply f l e x i b i l i t y on the part of 185 t h e s t a f f . " I n c o r p o r a t i n g t h e c o n c e p t s o f h o s p i c e i n t o t h e e x i s t i n g c a r e s e r v i c e s as an a l t e r n a t i v e a pproach t o h o s p i c e c a r e i s bas e d on a commitment t o t h e p a t i e n t and not t h e d i s e a s e " ( S t a r k & Johnson, 1983, p.65) . The s t r e n g t h s and v a l u e o f t h e s u p p o r t system must be c o n s i d e r e d , e s p e c i a l l y when a p a t i e n t and f a m i l y have been c a r e d f o r i n t h e system, o f t e n f o r many y e a r s . A t t h e t i m e when t h e p a t i e n t and f a m i l y a r e d e a l i n g w i t h t h e s t r e s s o f t h e p r o g r e s s i o n o f t h e d i s e a s e , f a m i l i a r p e o p l e and f a m i l i a r environment can p r o v i d e s u p p o r t and n u r t u r i n g . L e n d i n g c r e d e n c e t o t h i s approach i s t h e e c o l o g i c a l p e r s p e c t i v e w h i c h s u g g e s t s t h a t " p r a c t i c e s h o u l d model i t s e l f a f t e r l i f e , s h o u l d u t i l i z e n a t u r a l systems as s o u r c e s o f h e l p and change, and s h o u l d p r o t e c t and n u r t u r e t h e s o u r c e s and o p p o r t u n i t i e s f o r growth and s e l f - r e a l i z a t i o n t h a t e x i s t i n a c l i e n t ' s human env i r o n m e n t " ( S t a r k & Johnson, 1983, p . 6 5 ) . Not removing t h e p a t i e n t and f a m i l y from t h e environment i n whic h t h e y have become f a m i l i a r a l l o w s them t o c o n t i n u e t o f e e l t h e s u p p o r t o f t h a t e n v i r o n m e n t . S t a r k & Johnson (1983) s u g g e s t a l s o t h a t t h e p a t i e n t and f a m i l y a r e a b l e t o c o n t i n u e i n an a l r e a d y - e s t a b l i s h e d p e r s o n a l r o u t i n e r a t h e r t h a n h a v i n g t o move t o a new environment where t h e y may have d i f f i c u l t y r e - e s t a b l i s h i n g t h a t i n d i v i d u a l i z e d r o u t i n e . The d i s a d v a n t a g e s o f i n t r o d u c i n g t h i s " p h i l o s o p h y " 186 approach without an accompanying protocol, i s that there probably w i l l not ex i s t equal standards of care across working areas. There w i l l be l i t t l e pressure to seek advanced education and/or t r a i n i n g i n dealing with dying i n d i v i d u a l s , as there w i l l always be someone else who can do the job with more i n t e r e s t . It puts no demands on the personnel to change t h e i r actual work habits because there i s no r e a l reward for doing so. This philosophy would simply become something else r o u t i n i z e d into d a i l y professional a c t i v i t y . Programs such as Quality Assurance demonstrate the s a t i s f a c t i o n that can be gained when p o s i t i v e changes i n work habits are supported and follow a well-established protocol. When s t a f f understands what they are doing, why they are doing i t , and are supported for i t , they w i l l be s a t i s f i e d to continue those p r a c t i c e s . Any group proposing to s t a r t a hospice program or other form of care for dying patients should move through an organized process of planning that examines the reasons for proposing the program, that t r i e s to determine the need for such a program, and that reviews what i s already being done. To some extent t h i s study has addressed the l a s t two factors and has assumed that a program needs to be proposed to better serve the dying patients. This study has determined with some confidence that there i s a need for such a program, and perceptions of current practices were assessed. Furthermore, the administration must also consider what type of p a l l i a t i v e 187 care program w i l l best s u i t i t s purposes, must review the resources that are available for the program, should i d e n t i f y which patients i t f e e l s i t can best serve, and must create a phased plan of development for the proposed program. 5. CONCLUSION Riverview Hospital needs to develop and implement a p a l l i a t i v e care program that meets the s p e c i a l needs of the dying and t h e i r families, p a r t i c u l a r l y i n the G e r i a t r i c D i v i s i o n . This p o l i c y needs to be studied, practiced, evaluated, and supported within the organizational, economic, and p o l i t i c a l framework of the Hospital. As a p a l l i a t i v e / h o s p i c e program develops, i t i s important that i t avoids o f f e r i n g more than i t can d e l i v e r . Based on the advantages and disadvantages of the various models and approaches to dealing with dying and death i n an i n s t i t u t i o n , i t would be preferable that each unit within the G e r i a t r i c D i v i s i o n develop a p a l l i a t i v e care team, thus allowing each dying i n d i v i d u a l to stay on the home-unit. The idea of a philosophy approach incorporating the concepts of p a l l i a t i v e care without formalizing a program per se i s v a l i d as a beginning measure, however, I believe that i t would not accomplish the desired outcome. Staff members w i l l not l i k e l y a l t e r p ractice unless there i s a mandate to do so and unless 188 t h a t mandate i s s u p p o r t e d , u n d e r s t o o d , and a p e r s o n a l commitment i s made. I n o r d e r f o r a p h i l o s o p h i c a l a p p r o a c h t o work, as I u n d e r s t a n d i t , a l l o f t h e s t a f f would have t o be t r a i n e d and e d u c a t e d on t h e b a s i c f o u n d i n g c o n c e p t s o f p a l l i a t i v e c a r e . I t must be ke p t i n mind t h a t n ot everyone wants t o o r f e e l s c o m f o r t a b l e w o r k i n g w i t h d y i n g p e o p l e . These s t a f f members s h o u l d not t h e n be f o r c e d i n t o s uch a r o l e , as t h i s w i l l o n l y s e r v e t o undermine t h e p r o c e s s . I t i s based on t h i s r e a s o n i n g , and a l s o out o f c o n c e r n r e g a r d i n g r e l o c a t i o n , t h a t I propose t h a t each u n i t d e v e l o p i t s own c o r e p a l l i a t i v e c a r e team. These would be c o m p r i s e d o f s t a f f t h a t would v o l u n t e e r , would be a p p r o p r i a t e l y s c r e e n e d , t r a i n e d , and c o n t i n u o u s l y e v a l u a t e d . They would a l s o need t o be s u p p o r t e d by o t h e r s t a f f and a d m i n i s t r a t i o n . As t h e s e teams d e v e l o p , i d e a l l y an environment would be f o s t e r e d whereby t h e p h i l o s o p h y approach would s p i l l o v e r t o o t h e r s t a f f i n a l e s s - t h r e a t e n i n g way. By h a v i n g d e s i g n a t e d p a l l i a t i v e c a r e teams, t h e s t a f f members on t h e team c o u l d p a r t i c i p a t e i n c o n t i n u i n g e d u c a t i o n , s u p p o r t groups, r e s e a r c h , and advocacy. U n f o r t u n a t e l y , a d i s a d v a n t a g e t o t h i s a p p r o a c h i s t h a t many o f t h e p r o f e s s i o n a l groups t h a t s h o u l d be on t h e team have a s m a l l s t a f f w i t h i n t h e G e r i a t r i c D i v i s i o n i t s e l f . F o r example, o c c u p a t i o n a l t h e r a p i s t s , d i e t i c i a n s , p a s t o r a l c a r e , p h y s i c i a n s and p s y c h i a t r i s t s would more t h a n l i k e l y have t o 189 o v e r l a p t h e i r s e r v i c e s o v e r s e v e r a l u n i t s , and t h u s would be i n v o l v e d on a number o f teams. T h i s may i n t e r f e r e w i t h t h e c o h e s i v e n e s s o f t h e teams, and may i n c r e a s e w o r k l o a d which would be r e s e n t e d . F o r example, not o n l y would t h e y have t o a t t e n d t h e r e g u l a r ward rounds b u t a l s o a s e p a r a t e p a l l i a t i v e c a r e r ound i f deemed n e c e s s a r y , and a l s o a t t e n d t h e i n i t i a l and o n g o i n g e d u c a t i o n a l and s u p p o r t s e s s i o n s . However, t h i s may not be a l a r g e c o n c e r n because o f t h e numbers o f p a t i e n t s t h a t w i l l a c t u a l l y be i n v o l v e d i n t h e program. The a d m i n i s t r a t i o n may a l s o choose t o e s t a b l i s h a more c e n t r a l i z e d , s e l f - c o n t a i n e d p a l l i a t i v e c a r e u n i t w i t h i n t h e G e r i a t r i c D i v i s i o n . I f a s t u d y o f i n c i d e n c e and need d e t e r m i n e s t h a t such a u n i t would be f e a s i b l e and w a r r a n t e d , t h e n a team s h o u l d be d e v e l o p e d t h a t would o n l y work on t h a t u n i t . R e l o c a t i o n i s s u e s would have t o be c o n s i d e r e d and b e t t e r p r e p a r a t i o n c a r r i e d o u t . U n f o r t u n a t e l y , t h i s approach does not encourage s t a f f o u t s i d e o f t h e u n i t t o u n d e r s t a n d and commit t o c o n c e p t s o f p a l l i a t i v e c a r e . R a t h e r t h a n becoming more v i s i b l e and a l l - e n c o m p a s i n g , p a l l i a t i v e c a r e p r a c t i c e may i n a c t u a l f a c t become an i s o l a t e d and p o c k e t e d v e n t u r e w i t h i n t h e s e p a r a t e d u n i t . T h e r e f o r e , i t i s p r o p o s e d t h a t f i r s t t h e network approach s h o u l d be t a k e n i n o r d e r t o i n c r e a s e v i s i b i l i t y o f t h e program, t h e number o f s u p p o r t o p p o r t u n i t i e s , and reduce r e l o c a t i o n and t r a n s f e r trauma. A l a t e n t consequence o f t h i s 190 would be a s p i l l - o v e r o f p h i l o s o p h y a f f e c t i n g a l l p a t i e n t c a r e by a l l s t a f f . U l t i m a t e l y t h e n , t h e h o s p i t a l might c o n s i d e r a s e p a r a t e u n i t as w e l l t o s e r v e s p e c i a l - n e e d s c l i e n t s and d e c i s i o n s would have t o be made as t o who t h e s e c l i e n t s might be. I t w i l l be n e c e s s a r y t h a t t h e a d m i n i s t r a t i o n c o n s i d e r f u n d i n g and i t s a v a i l a b i l i t y i n d e t e r m i n i n g w h i c h approach w i l l be t a k e n . As was d i s c u s s e d i n C h a p t e r One, g r e a t e r f u n d i n g from government i s dependent on t h e number o f components a program has and t h e n , t h e p a r t i c u l a r L e v e l i t a c h i e v e s . A L e v e l One program c o n t a i n s one component, and a L e v e l Four program, t h e h i g h e s t , c o n t a i n s s i x t o n i n e components. Thus, i t would be a p p r o p r i a t e t o c o n s i d e r t h e n i n e components o f c a r e d e t e r m i n e d by HPCA o f BC ( a d m i n i s t r a t i o n , symptom c o n t r o l , home, h o s p i t a l , bereavement, p a s t o r a l , v o l u n t e e r , p r o f e s s i o n a l t r a i n i n g and e d u c a t i o n , and r e s e a r c h and e v a l u a t i o n ) and t h e f e a s i b i l i t y o f each b e i n g i n t e g r a t e d i n t o a program a t R i v e r v i e w H o s p i t a l . A d m i n i s t r a t i o n , t h e f i r s t program component w i l l a l s o i n e v i t a b l y be t h e most c o n t e n t i o u s component a t R i v e r v i e w H o s p i t a l . T r a d i t i o n a l l y a d m i n i s t r a t i o n o f p a l l i a t i v e c a r e programs have been c o n d u c t e d by p h y s i c i a n s . However, because R i v e r v i e w H o s p i t a l i s a me n t a l i n s t i t u t i o n and not a g e n e r a l h o s p i t a l p e r se, arrangements would have t o be made t o sh a r e a d m i n i s t r a t i v e power between b o t h t h e p h y s i c i a n s and t h e 191 p s y c h i a t r i s t s . T h i s w i l l n o t be an easy t a s k c o n s i d e r i n g t h e h i s t o r y o f m e n t a l i n s t i t u t i o n s and p s y c h i a t r y ' s p l a c e i n t h e s e i n s t i t u t i o n s . Q u e s t i o n s o f how t o o r g a n i z e and d e l i v e r h o s p i c e c a r e f r e q u e n t l y prompt c o n t r o v e r s y c o n c e r n i n g i t s p r o p e r p l a c e i n t h e e x i s t i n g h e a l t h c a r e d e l i v e r y systems. A d m i n i s t r a t i o n i n c l u d e s e v e r y t h i n g from t h e a c t u a l o r g a n i z a t i o n a l s t r u c t u r e , f i n a n c i a l a s p e c t s , and s t a f f i n g . F i n a n c i a l a n a l y s i s o f h o s p i c e c a r e i s i n i t i a t e d i n t h e p l a n n i n g p r o c e s s . H o s p i c e program p l a n n i n g must i d e n t i f y h o s p i c e c a r e as i t r e l a t e s t o t h e o r g a n i z a t i o n p r o v i d i n g t h e s e r v i c e , t o t h o s e who would r e c e i v e s e r v i c e s , and t o p o l i t i c a l and economic r e a l i t i e s . T h i s i s a most d i f f i c u l t a s p e c t o f t h e program p l a n n i n g , s i n c e t h e p r o d u c t o f such i d e n t i f i c a t i o n o f t e n p r e s e n t s t h e c h a l l e n g e o f change t o t h e system. I t i s e s s e n t i a l t o o r g a n i z e e f f e c t i v e l y t h e r e s o u r c e s r e q u i r e d t o meet t h e need and demand. A key f e a t u r e o f h o s p i c e / p a l l i a t i v e c a r e i s t h a t i t i s d i r e c t e d p r i m a r i l y a t symptom c o n t r o l r a t h e r t h a n a t d i s e a s e c o n t r o l . I n h o s p i c e c a r e , symptom c o n t r o l i s a c c o m p l i s h e d w i t h t h e use o f a minimum o f d i a g n o s t i c s t u d i e s and i n v a s i v e t h e r a p e u t i c measures. As a r e s u l t , h o s p i c e p a t i e n t s r e c e i v e r e l a t i v e l y l i t t l e t e c h n o l o g i c a l c a r e , b u t a g r e a t d e a l o f p e r s o n a l a t t e n t i o n t o ' c o n t r o l p a i n . E m o t i o n a l t u r m o i l , s o c i a l problems, and s p i r i t u a l q u e s t i o n s may a l l c o n t r i b u t e t o 192 what Saunders (1980) c a l l s " t o t a l p a i n " . Too o f t e n we t h i n k o f p a i n as a p h y s i c a l b i o l o g i c a l phenomenon and f a i l t o v iew p a i n as s u f f e r i n g , as a human e x p e r i e n c e i n v o l v i n g t h e whole p e r s o n . Because p a i n i s complex, i t s t h e r a p y r e q u i r e s an i n t e r d i s c i p l i n a r y team. H o s p i c e c a r e must i n v o l v e a commitment t o r e l i e v e t h e e m o t i o n a l and m e n t a l d i s t r e s s o f p a t i e n t and f a m i l y . Some o f t h e s u f f e r i n g o f p a t i e n t s can n e v e r be e r a d i c a t e d . Even when t h e r a p y i s s u c c e s s f u l i n r e l i e v i n g t h e p a t i e n t ' s p h y s i c a l agony, t h e r e r emains a deeper s u f f e r i n g - t h e weakness and p r o g r e s s i v e l o s s o f c o n t r o l , t h e d i s f i g u r e m e n t and l o n e l i n e s s , t h e f e a r s and r e g r e t s , t h e g u i l t and d e s p a i r . P a t i e n t s do not e x p e c t us t o have a l l t h e answers. But t h e y l o n g f o r someone who i s w i l l i n g t o l i s t e n and i n some s m a l l way t o s h a r e i n t h e i r s u f f e r i n g . The c o n t r o l o f p a i n i n t e r m i n a l d i s e a s e demands t h e h i g h e s t l e v e l o f s c i e n t i f i c knowledge and c l i n i c a l e x p e r t i s e . The d y i n g p e r s o n u r g e s us: "Watch w i t h me. H e lp me t o d i e p e a c e f u l l y w i t h o u t p a i n , b u t a l s o h e l p me t o l i v e u n t i l I d i e " ( G e n t l e s , p. 16) . Home c a r e may o r may not be an i s s u e f o r R i v e r v i e w H o s p i t a l , a l t h o u g h i t i s one o f t h e components o f a good p a l l i a t i v e c a r e program. Many o f t h e p a t i e n t s i n t h e G e r i a t r i c D i v i s i o n have been t h e r e f o r y e a r s , even decades, and have no o t h e r home t o go t o , or no a v a i l a b l e f a m i l y . P r o v i s i o n c o u l d be made f o r t h e e x c e p t i o n a l c a s e , however, 193 because R i v e r v i e w H o s p i t a l has e s t a b l i s h e d G e r i a t r i c O u t r e a c h Teams t h a t c o u l d make i t p a r t o f t h e i r r o l e t o f o l l o w someone i n t h e community, i n t h e e vent t h a t she/he i s d i s c h a r g e d home. There i s a l s o a p o l i c y t h a t a l l o w s p a t i e n t s t o t a k e an e x t e n d e d l e a v e w i t h o u t l o s i n g t h e i r bed a t t h e i n s t i t u t i o n . Thus, c o n c e i v a b l y , a d y i n g i n d i v i d u a l c o u l d be moved t o home and back under t h e a p p r o p r i a t e c o n d i t i o n s . H o s p i t a l c a r e i s i n h e r e n t i n t h i s i n s t i t u t i o n a l t h o u g h i t i s a m e n t a l i n s t i t u t i o n . There i s emphasis p l a c e d on p h y s i c a l and m e d i c a l a s p e c t s o f c a r e , e s p e c i a l l y i n t h e G e r i a t r i c D i v i s i o n where p a t i e n t s can range from p e r s o n a l c a r e l e v e l t o e x t e n d e d c a r e l e v e l . There i s a u n i t c a l l e d N o r t h Lawn t h a t i s a d e s i g n a t e d m e d i c a l / s u r g e r y a r e a . C e r t a i n l y , i f a p a l l i a t i v e c a r e u n i t were t o d e v e l o p t h e r e would have t o be e x p a n s i o n o f e x i s t i n g r e s o u r c e s and n e c e s s a r y equipment. There i s an ambulance s e r v i c e a v a i l a b l e on campus f o r t r a n s f e r s t o a h o s p i t a l f a c i l i t y . A bereavement component c o u l d be o f f e r e d a t R i v e r v i e w H o s p i t a l b u t would have t o be i n d i v i d u a l i z e d and f l e x i b l e . R i v e r v i e w H o s p i t a l i s a p r o v i n c i a l i n s t i t u t i o n so i t s p a t i e n t s come from a l a r g e g e o g r a p h i c a l a r e a . I n some s i t u a t i o n s , t h e r e would be no f a m i l y o r f r i e n d s i n v o l v e d i n s u p p o r t i n g t h e d y i n g i n d i v i d u a l , e x c e p t f o r s t a f f , and, i n o t h e r s i t u a t i o n s , t h e r e may be f a m i l y , 'but a t a d i s t a n c e . I n t h i s c a s e , p o s s i b i l i t i e s f o r a bereavement program a r e l i m i t e d . F o r 194 o t h e r s , f a m i l y may be g e o g r a p h i c a l l y c l o s e . However, i t must be c o n s i d e r e d t h a t t h e b e r e a v e d f a m i l y members may be e l d e r l y t h e m s e l v e s and have d i f f i c u l t y a c c e s s i n g t h e i n s t i t u t i o n . F o r o t h e r s , any c o n n e c t i o n t o R i v e r v i e w H o s p i t a l would be q u i c k l y and d e l i b e r a t e l y s e v e r e d when t h e d e a t h o c c u r s . Perhaps t h e d e a t h would come as a r e l i e f because i t would a t l e a s t p h y s i c a l l y e l i m i n a t e t h e shame and g u i l t o f h a v i n g a m e n t a l l y i l l f a m i l y member. The purpose o f bereavement c a r e i s t o p r o v i d e c o m f o r t , u n d e r s t a n d i n g , s u p p o r t , and i n f o r m a t i o n t o s u r v i v i n g r e l a t i v e s and f r i e n d s i n an e f f o r t t o a l l e v i a t e t h e d i s t r e s s o f bereavement and promote t h e most f a v o u r a b l e outcome p o s s i b l e (Zimmerman, p . 9 2 ) . O b v i o u s l y , bereavement s e r v i c e s t o f r i e n d s and f a m i l y o f R i v e r v i e w H o s p i t a l p a t i e n t s w i l l a l s o have t o i n c l u d e t h e l o s s and g r i e f i s s u e s o f m e n t a l i l l n e s s . The bereavement component c o u l d i n c l u d e f o l l o w - u p phone c a l l s , one-to-one f o l l o w - u p , a n n u a l memorial s e r v i c e , and c o n n e c t i o n t o community r e s o u r c e s . R i v e r v i e w H o s p i t a l does have a v e r y a c t i v e p a s t o r a l c a r e s e r v i c e s department w i t h i n t h e h o s p i t a l . U n f o r t u n a t e l y , t h e s t a f f i s v e r y s m a l l , e x c e p t when i t i s supplemented w i t h c h a p l a i n c y s t u d e n t s . The p a s t o r a l c a r e s t a f f have an e c u m e n i c a l u n d e r s t a n d i n g and can b r i n g i n v a r i o u s r e l i g i o u s l e a d e r s from t h e community, i f r e q u e s t e d . Because o f t h e s m a l l s t a f f , i t i s i m p o r t a n t t h a t a l l members p a r t i c i p a t e i n 195 s p i r i t u a l c a r e o u t s i d e o f t h e s t r i c t l y r e l i g i o u s f o r m a l i t i e s . As w e l l , R i v e r v i e w H o s p i t a l has a v e r y s u c c e s s f u l v o l u n t e e r s e r v i c e s department. I t i s u n d e r s t a n d a b l e t h a t t h e head o f t h i s department has t o work v e r y h a r d a t r e c r u i t i n g v o l u n t e e r s . The m e n t a l l y i l l , e s p e c i a l l y t h e i n s t i t u t i o n a l i z e d ones, a r e f o r t h e most p a r t r e g a r d e d as s o c i a l l e p e r s , and t h u s , i t t a k e s a s p e c i a l p e r s o n t o overcome t h e s e p r e j u d i c e s t o v o l u n t e e r i n such a p l a c e . The t a s k o f w o r k i n g w i t h t h e d y i n g w i t h i n a p s y c h i a t r i c i n s t i t u t i o n would not a t t r a c t many v o l u n t e e r s . R i v e r v i e w H o s p i t a l i s somewhat i n a c c e s s i b l e as w e l l . The v o l u n t e e r component t o a p a l l i a t i v e program a t R i v e r v i e w H o s p i t a l c o u l d i n c l u d e s c r e e n i n g , o r i e n t a t i o n , and on g o i n g e d u c a t i o n . The v o l u n t e e r would work w i t h t h e p a t i e n t s and f a m i l i e s i n - h o s p i t a l and/or a t home, as w e l l as be i n v o l v e d i n c o n s u l t a t i o n and bereavement f o l l o w - u p . A l t h o u g h h o s p i c e c a r e i s l a b o u r i n t e n s i v e , much t i m e i s c o n t r i b u t e d by v o l u n t e e r s . V o l u n t e e r s a r e e s s e n t i a l t o s u c c e s s f u l h o s p i c e c a r e ; t h e e x i s t e n c e o f o r g a n i z e d v o l u n t e e r s e r v i c e s i n h o s p i t a l s f a c i l i t a t e s r e c r u i t m e n t and i n v o l v m e n t i n t h e h o s p i c e c a r e team. V o l u n t e e r s can add needed s u p p o r t t o a team t o d e f r a y t h e burden t h a t f u l l - t i m e s t a f f might f e e l . R i v e r v i e w H o s p i t a l has a s t r o n g committment t o p r o f e s s i o n a l t r a i n i n g and e d u c a t i o n . T h i s i s shown by t h e monthly g r a n d round s e s s i o n s , as w e l l as on g o i n g workshops and 196 e d u c a t i o n a l o p p o r t u n i t i e s p r o v i d e d by t h e Human Re s o u r c e s Department. There i s an e x c e l l e n t l i b r a r y w h i c h i s c o n n e c t e d t o a l a r g e r l i b r a r y system, i n c l u d i n g t h e r e s o u r c e s o f t h e U n i v e r s i t y o f B r i t i s h .Columbia. There i s a l s o a good s e l e c t i o n o f a u d i o and v i s u a l equipment. T h e r e f o r e , t h e r e i s no doubt t h a t w i t h such a commitment and a v a i l a b l e r e s o u r c e s t h a t R i v e r v i e w H o s p i t a l c o u l d d e v e l o p an i n - d e p t h i n t e r d i s c i p l i n a r y t r a i n i n g and e d u c a t i o n program f o r t h o s e i n t e r e s t e d i n o r a l r e a d y w o r k i n g w i t h d y i n g i n d i v i d u a l s . F u r t h e r m o r e , t h i s i n s t i t u t i o n has d e m o n s t r a t e d a commitment t o r e s e a r c h and e v a l u a t i o n o f s e r v i c e s . R i v e r v i e w H o s p i t a l has p r i d e d i t s e l f on i t s r e p u t a t i o n f o r advances i n such a r e a s as b e h a v i o u r a l and c o g n i t i v e approaches t o t r e a t m e n t , s t u d y i n o r g a n i c b r a i n syndromes, m e d i c a t i o n i s s u e s , e t c . T h i s i n s t i t u t i o n has t h e r e s o u r c e s t o i n c l u d e a • r e s e a r c h component i n i t s p a l l i a t i v e c a r e program. I t i s o n l y t h r o u g h r e s e a r c h t h a t t h e q u a l i t y o f t e r m i n a l c a r e can be advanced. Much o f what has been documented r e g a r d i n g t h e advantages o f h o s p i c e / p a l l i a t i v e c a r e o v e r c o n v e n t i o n a l c a r e i s a n e c d o t a l i n n a t u r e . A t R i v e r v i e w H o s p i t a l , s t u d y o f how a h o s p i c e / p a l l i a t i v e program can be i n t e g r a t e d i n t o i t s o r g a n i z a t i o n a l s t r u c t u r e w i l l h e l p t h e a d m i n i s t r a t i o n make more r a t i o n a l d e c i s i o n s r e g a r d i n g t h e s e l e c t i o n o f a model o f h o s p i c e c a r e t h a t w i l l 'work f o r t h a t community. Measurement t o o l s a l s o need t o be d e v e l o p e d t o s t u d y a number o f problems 197 such as s p e c i f i c needs o f t h e d y i n g m e n t a l l y i l l t h a t a r e d i f f e r e n t from a 'normal' p o p u l a t i o n o f t e r m i n a l l y i l l , and o t h e r t e c h n i q u e s o f h o s p i c e c a r e t h a t would be b e n e f i c i a l f o r t h e m e n t a l l y i l l e l d e r l y . Thus, f u r t h e r r e s e a r c h a t R i v e r v i e w H o s p i t a l would h e l p t h e a d m i n i s t r a t i o n c o n s i d e r w h i c h p a t i e n t s a r e t o be s e r v e d , how t h e y w i l l be s e r v e d , and what p o l i c i e s w i l l be d e v e l o p e d around t h a t . As more h o s p i c e programs d e v e l o p , and c o m p e t i t i o n f o r f u n d i n g s o u r c e s i n c r e a s e s , r e s e a r c h w i l l assume even g r e a t e r s i g n i f i c a n c e . I t would appear a f t e r a r e v i e w o f t h e f e a s i b i l i t y o f t h e n i n e components o f c a r e t h a t R i v e r v i e w H o s p i t a l has t h e p o t e n t i a l and r e s o u r c e s t o d e v e l o p and implement a h i g h l e v e l p a l l i a t i v e / h o s p i c e c a r e program. However, i f i t i s e v e r t o g e t o f f t h e ground, some key a d m i n i s t r a t i v e i s s u e s must be r e s o l v e d o r commitment and s u p p o r t f o r t h e program w i l l n e v e r be a c h i e v e d . The R i v e r v i e w H o s p i t a l a d m i n i s t r a t i o n needs t o d e v e l o p a program t h a t i s s u p p o r t e d and rewarded by t h e o r g a n i z a t i o n . The w o r k i n g environment o f R i v e r v i e w H o s p i t a l can be v e r y s t r e s s f u l f o r t h e c a r e g i v e r s , who must p e r f o r m d i f f i c u l t , t e d i o u s , and p o o r l y rewarded t a s k s i n t h e i n s t i t u t i o n a l s e t t i n g . What t h e o r g a n i z a t i o n w i l l get i n t h e way o f i n v o l v e m e n t from i t s members i s i n l i n e w i t h what i t g i v e s i n t h e way o f rewards. U n f o r t u n a t e l y , p r o f e s s i o n a l rewards a r e l a c k i n g , e s p e c i a l l y when w o r k i n g w i t h t h e d y i n g , s i n c e t h e s e 1 9 8 a r e t o be f o u n d i n a c u t e - c a r e c u r a t i v e s e t t i n g s . Each d y i n g p a t i e n t i s a r e m i n d e r t o h o s p i t a l s t a f f members o f t h e i r own p o t e n t i a l i l l n e s s and d e a t h , and t h u s , i s energy d r a i n i n g . H e a l t h c a r e p r o f e s s i o n a l s cannot s u p p o r t t h e p a t i e n t and f a m i l y u n l e s s t h e y t h e m s e l v e s a r e s u p p o r t e d on t h e j o b - by c o l l e a g u e s , s u p e r v i s o r s , e t c . , as t h e y work w i t h t h e p a t i e n t and t h e f a m i l y and g r i e v e w i t h them o v e r t h e d e a t h o f a p a t i e n t . E v e n t u a l l y , s t a f f can g i v e no l o n g e r i f t h e y a r e not e m o t i o n a l l y g i v e n t o . The r e f i l l i n g , t h e g r a t i f i c a t i o n , t h e rewards come p a r t l y from m a t e r i a l goods ( s a l a r y , f r i n g e b e n e f i t s , w o r k i n g environment) but more from t h e k i n d n e s s , p a t i e n c e , a p p r o v a l , s u p p o r t , r e s p e c t , a f f e c t i o n , v a l i d a t i o n o f i d e a s , encouragement, and even c h a l l e n g e p r e s e n t e d by c o l l e a g u e s and s u p e r v i s o r s . There needs t o be a p s y c h o l o g i c a l c o n t r a c t between t h e o r g a n i z a t i o n and t h e s t a f f member. Whether p e o p l e work e f f e c t i v e l y , whether t h e y g e n e r a t e commitment, l o y a l t y , and e n t h u s i a s m f o r t h e o r g a n i z a t i o n and i t s g o a l s , and whether t h e y o b t a i n s a t i s f a c t i o n from t h e i r work depends t o a l a r g e measure on two c o n d i t i o n s . The f i r s t i s t h e degree t o wh i c h t h e i r own e x p e c t a t i o n s o f what t h e o r g a n i z a t i o n w i l l p r o v i d e them and what t h e y owe a r e i n l i n e w i t h t h e o r g a n i z a t i o n s e x p e c t a t i o n s . The second f a c t o r i s t h e n a t u r e o f what i s a c t u a l l y t o be exchanged. The r e l a t i o n s h i p between t h e i n d i v i d u a l ' a n d t h e o r g a n i z a t i o n i s i n t e r a c t i v e , and o n g o i n g b a r g a i n i n g t o e s t a b l i s h a w o r k a b l e p s y c h o l o g i c a l 199 c o n t r a c t t a k e s p l a c e . R i v e r v i e w H o s p i t a l i s a t t h e f o r e f r o n t o f an o p p o r t u n i t y t o c o n t r i b u t e something v a l u a b l e t o t h e h e a l t h c a r e system i n g e n e r a l , and s p e c i f i c a l l y t o t h e m e n t a l h e a l t h f i e l d . R i v e r v i e w H o s p i t a l has t h e o p p o r t u n i t y t o r a i s e t h e l e v e l o f awareness r e g a r d i n g p a l l i a t i v e c a r e beyond what i t has t r a d i t i o n a l l y p r o v i d e d . I t has a commited s t a f f t h a t i s k n o w l e d g e a b l e on m e n t a l d i s o r d e r s t h a t c o u l d be t r a i n e d and e d u c a t e d t o p r o v i d e p a l l i a t i v e c a r e t o t h e p e o p l e d y i n g w i t h i n i t s w a l l s . I f p r o p e r l y c o n d u c t e d r e s e a r c h i s done i n t o p a l l i a t i v e c a r e w i t h t h e m e n t a l l y i l l a t t h i s i n s t i t u t i o n , g r e a t advances c o u l d be made i n t h e h o s p i c e f i e l d t h a t would open up new avenues so t h a t more p e o p l e c o u l d e x p e r i e n c e t h e c o m f o r t a b l e d e a t h t h a t p a l l i a t i v e c a r e p r o v i d e s . We have t h e c a p a b i l i t y t o be a b l e t o p r o v i d e p a l l i a t i v e c a r e t o a l l r e g a r d l e s s o f c o n d i t i o n . A l t h o u g h p e o p l e w i t h n o n m a l i g n a n t d i s e a s e c o n s t i t u t e a r e l a t i v e l y s m a l l p e r c e n t a g e o f p a t i e n t s , i t seems p r u d e n t t o d e v o t e some s p e c i a l c o n s i d e r a t i o n t o t h e i r c a r e . By p r o v i d i n g h u m a n i s t i c c a r e t o t h e d y i n g m e n t a l l y i l l e l d e r l y t h r o u g h a p a l l i a t i v e c a r e approach, t h i s i n s t i t u t i o n w i l l be g i v i n g t h e message t o s o c i e t y t h a t t h e m e n t a l l y i l l a r e p e o p l e w i t h v a l u e and d i g n i t y , and d e s e r v e t o d i e i n such a manner. The m e n t a l l y i l l , t h e e l d e r l y , and t h e d y i n g have been v o i c e l e s s , p o w e r l e s s p e o p l e i n our s o c i e t y . There was an i n c r e a s e d a t t e n t i o n i n r e c e n t y e a r s t o t h e i s s u e o f d e a t h and 200 d y i n g , e s p e c i a l l y i s s u e s o f e u t h a n a s i a , r i g h t t o d i e , l i v i n g w i l l s , e t c . R i v e r v i e w H o s p i t a l needs t o a l s o g i v e a t t e n t i o n t o t h i s i s s u e . Not o n l y w i l l t h e h o s p i t a l b e n e f i t ( i e . , f i n a n c i a l l y , i n c r e a s e d s t a t u s ) from such an endeavour, b u t t h e p e o p l e i t i s s e r v i n g , f a m i l i e s , and t h e h e a l t h c a r e system as a whole. P a t i e n t c a r e i n g e n e r a l and c a r e o f t h e t e r m i n a l l y i l l i n p a r t i c u l a r w i l l be enhanced i f h o s p i c e becomes an i n t e g r a l p a r t o f m e d i c a l and men t a l h e a l t h c a r e , a l t h o u g h t h e r e l a t i o n s h i p between h o s p i c e as a p a r t and m e d i c i n e as a whole i s s t i l l d e v e l o p i n g . A l t h o u g h h o s p i c e has some f e a t u r e s t h a t d i f f e r e n t i a t e s i t from o t h e r a s p e c t s o f m e d i c i n e , much i s l o s t whenever h o s p i c e i s vi e w e d as o r becomes a s e p a r a t e e n t i t y . To p r o p e r l y f i t h o s p i c e c a r e i n t o m e d i c a l and m e n t a l h e a l t h c a r e w i l l t a k e some e f f o r t , but t h a t e f f o r t s h o u l d be r e w a r d i n g . H o s p i c e / p a l l i a t i v e c a r e draws from and c o n t r i b u t e s t o t h e r e s t o f m e d i c a l c a r e . H o s p i c e team members come from a v a r i e t y o f f i e l d s , b r i n g i n g t h e i r p a r t i c u l a r e x p e r t i s e t o i t . Some o f t h e c r i t i c a l e lements o f h o s p i c e c a r e , such as d e a l i n g w i t h t h e p a t i e n t and f a m i l y as a u n i t and t h e e f f e c t i v e use o f an i n t e r d i s c i p l i n a r y team, can be employed t o advantage i n many n o n h o s p i c e s i t u a t i o n s . I n f a c t , none o f t h e c a r d i n a l p r i n c i p l e s o f h o s p i c e c a r e d e s c r i b e d i n C h a p t e r One a r e i n any way i n c o m p a t i b l e w i t h t h e remainder o f m e d i c a l c a r e . None o f 201 them a r e even unique t o h o s p i c e . I m p l i c a t i o n s o f a g r a c e l e s s d e a t h o f t h e e l d e r l y expand w e l l beyond t h e i n d i v i d u a l c a s e . I t becomes a b r o a d e r c a r e i s s u e . The q u a l i t y o f t h e p r o c e s s o f d y i n g i s v i t a l i n s h a p i n g t h e way i n whi c h t h e b e r e a v e d a p p r o a c h t h e whole s u b j e c t o f d e a t h . The t e r m i n a l i l l n e s s o f a l o v e d one i s one of t h e few c o n t e x t s i n whi c h most p e o p l e have a p r o l o n g e d c o n t a c t w i t h t h e r e a l i t y o f d e a t h . S a d l y , f a m i l i e s most o f t e n a r e exposed t o t h e g r a c e l e s s d e a t h common i n modern i n s t i t u t i o n a l s e t t i n g s . As a r e s u l t , a t t i t u d e s t o w a r d d e a t h a r e apt t o be n e g a t i v e l y i n f l u e n c e d . Such a d v e r s e e x p e r i e n c e s r e i n f o r c e t h e c u l t u r a l message t h a t d e a t h i s an o b s c e n i t y w h i c h p e o p l e s h o u l d a v o i d a t a l l c o s t u n t i l t h e y must i n e v i t a b l y c o n f r o n t i t . Thus, t h e v e r y d i s c o m f o r t t h a t p r e v a i l s i n our c u l t u r e s u r r o u n d i n g d e a t h i s bound t o be r e i n f o r c e d i n a l l o b s e r v e r s because o f h i g h e r p r o b a b i l i t y t h a t t h e i r f u t u r e e n c o u n t e r s w i t h d e a t h w i l l be even more d i s t u r b i n g . In t o d a y ' s s o c i e t y h e a l t h c a r e p r o f e s s i o n a l s have been c h a l l e n g e d t o p r o v i d e h u m a n i s t i c c a r e t o t h e d y i n g . However, t h e i n r o a d s t h a t have been made i n p r o v i d i n g t h i s c a r e have m a i n l y f o c u s e d on t h e m i d d l e - c l a s s s u f f e r i n g from d i s e a s e e n t i t i e s s uch as c a n c e r . H o s p i c e p r i n c i p l e s c l e a r l y have a p p l i c a b i l i t y beyond t h i s group. I t i s t i m e t o e x t e n d t h e knowledge t h a t has been g a i n e d i n p a l l i a t i v e c a r e t o a n o t h e r 202 group o f d y i n g i n d i v i d u a l s , namely t h o s e s u f f e r i n g from m e n t a l d i s o r d e r s t h a t a r e i n c u r a b l e and o f t e n f a t a l . I t i s t i m e t o a f f o r d a t t e n t i o n t o t h i s v o i c e l e s s and p o w e r l e s s group i n our s o c i e t y , and g r a n t them even i n t h e i r f i n a l days a d i g n i t y t h a t may have been absent t h e i r e n t i r e l i v e s . The f u t u r e o f t h e h o s p i c e movement remains u n c e r t a i n . " I t i s a phenomenon t h a t i s c h a l l e n g i n g t h e c u r r e n t system, b u t l i k e any r e f o r m , i t i s f a c i n g t h e complex t a s k o f m a i n t a i n i n g i t s b a s i c i n t e g r i t y w h i l e r e m a i n i n g e l a s t i c enough t o accommodate change" (Backer, 1982, p . 7 1 ) . Each p r o j e c t must n e g o t i a t e t h e v a r i o u s i n t r i c a t e systems r e g a r d i n g d e l i v e r y o f h e a l t h c a r e whether t h e y be b u r e a u c r a t i c o r go v e r n m e n t a l . I n t h e f a c e o f t h e overwhelming needs o f t h e t e r m i n a l l y i l l , change w i l l come t o o l a t e f o r many. D y i n g i s l i k e l y t o c o n t i n u e t o t a k e p l a c e i n h o s p i t a l s , f o r t h e f o r e s e e a b l e f u t u r e , as l o n g as we c o n t i n u e t o see d e a t h as f u n d a m e n t a l l y and n a t u r a l l y m e d i c a l . We s h o u l d m i t i g a t e t h e t r a g i c e f f e c t s o f t h i s d i s t o r t e d v i s i o n by de-e m p h a s i z i n g t h e m e d i c a l a s p e c t s o f d y i n g . I f t h e aged must d i e i n h o s p i t a l s , so be i t . But we ought n ot l e t t h e m e d i c a l shadow o b l i t e r a t e i n d i v i d u a l i t y , v a l u e and meaning. I n c a r i n g f o r t h e d y i n g and m e n t a l l y - i l l aged, l e t us r e c o g n i z e d e a t h i n i t s t o t a l c o m p l e x i t y as a problem t h a t t r a n s c e n d s t h e s c i e n t i f i c and r e q u i r e s f o r i t s p r o p e r management t h e f u l l range o f human c r e a t i v i t y . What does i t mean t o be o l d , 203 mentally i l l , and what does i t mean to be old, mentally i l l and dying? Our society i s i n the process of deciding. 204 BIBLIOGRAPHY Abramson, M. (1984). E t h i c a l I s s u e s i n S o c i a l Work P r a c t i c e W i t h D y i n g P e r s o n s . I n L.H. S u s z y c k i e t a l . ( e d s . ) , S o c i a l  Work and Temrminal Care, The F o u n d a t i o n o f T h a n a t o l o g y S e r i e s , Volume 2, 129-135. B a c k e r , B.; Hannon, N. & R u s s e l l , N. (1982). Death and D y i n g :  I n d i v i d u a l s and I n s t i t u t i o n s . New York: John W i l e y & sons. B a r t o n , D. (ed.) (1977). 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New York: The American J o u r n a l of Nursing Company. Weick, A. (1981). Reframing the P e r s o n - i n Environment P e r s p e c t i v e . S o c i a l Work, March 1981, 26, 140-143. Weiner, J . (1970, May) . A t t i t u d e s o f P e d i a t r i c i a n s Toward the Care of F a t a l l y 111 C h i l d r e n . The J o u r n a l of P e d i a t r i c s , 76, 5, 700-705. Wise, H. et a l . (eds.) (1974). Making H e a l t h Teams Work. Cambridge, Mass.: B a l l i n g e r P u b l i s h i n g Company. Wilkes, E. (1982). The Dying P a t i e n t : The M e d i c a l Management of  I n c u r a b l e and Terminal I l l n e s s . NJ: George A. Bogden & Son, Inc. Worcester, A. (1977) . The Care of the Aged, the Dying and the  Dead. New York: Arno P r e s s . Zimmerman, J . M. (ed.) (1986). Hospice: Complete Care f o r the T e r m i n a l l y 111. Baltimore-Munich: Urban & Schwarzenberg. Zimmerman, J.M and Roche, K. (1986) . The Hospice Care Team. In J.M Zimmerman (ed.), Hospice: Complete Care f o r the T e r m i n a l l y 111. Baltimore-Munich: Urban & Schwarzenberg. 213 APPENDIX A O p e r a t i o n a l D e f i n i t i o n s o f P r o f e s s i o n a l s R e p r e s e n t e d i n t h e Sample H e a l t h Care Worker: P o s i t i o n F u n c t i o n : Under s u p e r v i s i o n o f Head Nurse and d i r e c t i o n o f Nurse 1 o r 2, p r o v i d e s n u r s i n g a s s i s t a n c e by p a r t i c i p a t i n g i n t h e day-to-day r o u t i n e n u r s i n g c a r e and p r o c e d u r e s o f p a t i e n t s , p a r t i c i p a t e s i n t h e r e h a b i l i t a t i v e , r e m o t i v a t i o n and s e l f - c a r e program f o r i n d i v i d u a l t r e a t m e n t . May be r e q u i r e d t o make beds, c l e a n t u bs/shower t r o l l e y s , mop up s p i l l s and wash p e r s o n a l c l o t h i n g . E d u c a t i o n and O c c u p a t i o n a l C e r t i f i c a t i o n : Secondary S c h o o l g r a d u a t i o n o r e q u i v a l e n t ; C o m p l e t i o n o f r e l a t e d c o u r s e such as home c a r e o f p a t i e n t s i s p r e f e r r e d . F i r s t A i d , C.P.R. and o t h e r t r a i n i n g i n t h e H e a l t h f i e l d a r e p r e f e r r e d . P a s t o r a l Care Worker ( C h a p l a i n ) P o s i t i o n F u n c t i o n : S p e c i a l i z e s i n i n t e r f a i t h , i n s t i t u t i o n a l m i n i s t r y t o p e r s o n s c o n f r o n t e d by c l e a r l y d e f i n e d p h y s i c a l , e m o t i o n a l , and s p i r i t u a l needs. I n c l u d e s t h e t r a d i t i o n a l p r o p h e t i c , 214 p a s t o r a l , and p r i e s t l y d i m e n s i o n s o f m i n i s t r y . E d u c a t i o n and O c c u p a t i o n a l C e r t i f i c a t i o n : C ompleted a c o u r s e i n . C h a p l a i n c y from a r e c o g n i z e d S c h o o l o f Theology, i n c l u d i n g an i n t e r n s h i p . S o c i a l Worker I P o s i t i o n F u n c t i o n : Under t h e s u p e r v i s i o n o f t h e P s y c h i a t r i c S o c i a l Worker S u p e r v i s o r , p r o v i d e s d i r e c t casework s e r v i c e s i n r e s p o n s e t o need, a s s e s s e s major m e n t a l i l l n e s s e s , chooses and a d a p t s a p p r o p r i a t e i n t e r v e n t i o n s / t r e a t m e n t o p t i o n s ; c o u n s e l s p a t i e n t s and t h e i r f a m i l i e s t o e f f e c t changes i n b e h a v i o u r and a t t i t u d e ; c o l l e c t s d a t a f o r s o c i a l h i s t o r y , i s a c c o u n t a b l e t o e v i c t i m , v i c t i m ' s f a m i l y and v i c t i m ' s system f o r c o n f i d e n t i a l i t y ; w r i t e s r e p o r t s and r e c o r d s s e r v i c e s t h a t have been p e r f o r m e d . E d u c a t i o n and O c c u p a t i o n a l C e r t i f i c a t i o n : B a c h e l o r o f S o c i a l Work from an a c c r e d i t e d U n i v e r s i t y . G e n e r a l P h y s i c i a n P o s i t i o n F u n c t i o n : Employees i n t h i s p o s i t i o n w i t h t h e P u b l i c S e r v i c e a r e 215 g e n e r a l l y under t h e a d m i n i s t r a t i v e d i r e c t i o n o f t h e Deputy M i n i s t e r , A s s o c i a t e Deputy M i n i s t e r , o r a p p r o p r i a t e s e n i o r m e d i c a l o f f i c e r , and a r e r e s p o n s i b l e f o r t h e c a r e and t r e a t m e n t o f p a t i e n t s as a s s i g n e d ; o r p e r f o r m i n g s p e c i a l i z e d d u t i e s i n a p u b l i c h e a l t h u n i t , c l i n i c o r f a c i l i t y ; may have s u p e r v i s o r y o r a d m i n i s t r a t i v e r e s p o n s i b i l i t i e s ; p e r f o r m i n g o t h e r r e l a t e d d u t i e s as r e q u i r e d . E d u c a t i o n and O c c u p a t i o n a l C e r t i f i c a t i o n : G r a d u a t i o n from a m e d i c a l s c h o o l o f r e c o g n i z e d s t a n d i n g w i t h a degree o f D o c t o r o f M e d i c i n e o r t h e e q u i v a l e n t , and r e g i s t r a t i o n i n t h e r e g i s t r a r o f t h e C o l l e g e o f P h y s i c i a n s and Surgeons o f B r i t i s h C o lumbia. P s y c h i a t r i s t P o s i t i o n F u n c t i o n : A p h y s i c i a n s p e c i a l i z i n g i n p s y c h i a t r y , a b r a n c h o f m e d i c i n e t h a t d e a l s w i t h t h e s c i e n c e and p r a c t i c e o f t r e a t i n g m e n t a l , e m o t i o n a l , o r b e h a v i o u r a l d i s o r d e r s . E d u c a t i o n and O c c u p a t i o n a l C e r t i f i c a t i o n : As above 216 APPENDIX B P i l o t Study R e s e a r c h 1. PURPOSES OF PILOT RESEARCH PROJECT In March 1990 a p i l o t t e s t was c o n d u c t e d w i t h t h e S o c i a l Work Department o f R i v e r v i e w H o s p i t a l t o meet two p u r p o s e s . The f i r s t was t o t e s t t h e m e a s u r i n g i n s t r u m e n t i n terms o f r e l i a b i l i t y and v a l i d i t y . T h i s t e s t u n c o v e r e d some d i f f i c u l t i e s t h e r e s p o n d e n t s had i n a n s w e r i n g t h e q u e s t i o n s , f o r example, how w e l l t h e q u e s t i o n s were u n d e r s t o o d , and o t h e r ambiguous a r e a s t h a t had gone u n d e t e c t e d d u r i n g t h e f o r m u l a t i o n o f t h e i n s t r u m e n t . The second purpose was t o o b t a i n i n f o r m a t i o n r e g a r d i n g t h e s o c i a l work department and t h e r o l e i t p l a y s i n t h i s v e r y i m p o r t a n t a r e a . The w r i t t e n s u r v e y o f t h e e n t i r e s o c i a l work department a c r o s s a l l t h r e e d i v i s i o n s o f R i v e r v i e w H o s p i t a l was done as a p i l o t s t u d y because t h e l a r g e r t h e s i s r e s e a r c h s t u d y was l i m i t e d t o t h e G e r i a t r i c D i v i s i o n o n l y . T h e r e f o r e , i n o r d e r t o u n d e r s t a n d t h e p e r c e p t i o n s o f a l l t h e s o c i a l w o r k e r s , and not j u s t t h e s o c i a l w o r k ers i n t h e G e r i a t r i c D i v i s i o n , i t was n e c e s s a r y t o s e p a r a t e i t from t h e l a r g e r s t u d y . A p p r o v a l f o r t h e p i l o t s t u d y was g i v e n by Mr. John Fox, Manager o f S o c i a l Work S e r v i c e s . 217 2. DATA COLLECTION PROCEDURES The method o f d a t a c o l l e c t i o n was as d e s c r i b e d i n C h a p t e r Three. Thus, 25 s o c i a l w o r k ers were s u r v e y e d from a c r o s s a l l t h r e e d i v i s i o n s o f R i v e r v i e w H o s p i t a l by a w r i t t e n q u e s t i o n n a i r e . E i g h t (8) q u e s t i o n n a i r e s were s e n t t o t h e G e r i a t r i c D i v i s i o n , w h i c h s e r v e s a d u l t s o v e r t h e age o f 65. E i g h t (8) were m a i l e d t o t h e s o c i a l w o r k e r s i n t h e A c u t e Care D i v i s i o n . T h i s d i v i s i o n i s e s s e n t i a l l y t h e assessment and s h o r t - t e r m t r e a t m e n t a r e a o f t h e h o s p i t a l f o r t h o s e p e o p l e below t h e age o f 65. F i n a l l y , n i n e (9) s o c i a l w o r k e r s were sampled i n t h e C o n t i n u i n g Care D i v i s i o n , where l o n g - t e r m t r e a t m e n t and r e h a b i l i t a t i o n i s c o n d u c t e d . The purpose o f t h i s a pproach was t o measure whether t h e d i f f e r e n c e s i n work s e t t i n g a f f e c t e d t h e p e r c e p t i o n s and o p i n i o n s e x p r e s s e d by t h e s o c i a l w o r k e r s . I t must be n o t e d , however, t h a t c l e a r d i s t i n c t i o n s cannot be made as s o c i a l w o r k ers w i t h i n R i v e r v i e w H o s p i t a l move a c r o s s d i v i s i o n s d u r i n g t h e i r c a r e e r a t t h i s i n s t i t u t i o n . 3. DATA ANALYSIS B o t h d e s c r i p t i v e and i n f e r e n t i a l s t a t i s t i c a l measurement was used. D e s c r i p t i v e s t a t i s t i c s such as f r e q u e n c i e s and p e r c e n t a g e s p r o v i d e d a means by which t h e sample d a t a c o u l d be o r g a n i z e d , summarized and i n t e r p r e t e d . I n f e r e n t i a l p r o c e d u r e s 218 a l l o w e d t h e r e s e a r c h e r t o make g e n e r a l i z a t i o n s from t h e sample t o t h e p o p u l a t i o n from w h i c h t h e sample was drawn. C o r r e l a t i o n s were made between t h e s c o r e s on t h e Death A n x i e t y S c a l e (DAS) and v a r i o u s p e r s o n a l and p r o f e s s i o n a l v a r i a b l e s s uch as age, sex, l e n g t h o f work e x p e r i e n c e , work and e d u c a t i o n a l e x p e r i e n c e . The hyp o t h e s e s t h a t were t e s t e d a r e : 1) Death a n x i e t y w i l l be g r e a t e r f o r f e m a l e s t h a n f o r males. 2) Death a n x i e t y w i l l d e c r e a s e as age i n c r e a s e s . 3) Death a n x i e t y w i l l v a r y i n v e r s e l y w i t h l e n g t h o f e x p e r i e n c e w o r k i n g a t R i v e r v i e w H o s p i t a l . 4) Death a n x i e t y w i l l v a r y i n v e r s e l y w i t h work e x p e r i e n c e w i t h t h e d y i n g as a s t u d e n t . 5) Death a n x i e t y w i l l v a r y i n v e r s e l y w i t h work e x p e r i e n c e w i t h t h e d y i n g as a p r o f e s s i o n a l . 6) Death a n x i e t y w i l l v a r y i n v e r s e l y w i t h f o r m a l e d u c a t i o n a l e x p e r i e n c e and t r a i n i n g i n w o r k i n g w i t h d y i n g p e o p l e and t h e i r f a m i l i e s . 7) Death a n x i e t y w i l l v a r y i n v e r s e l y w i t h i n f o r m a l e d u c a t i o n a l e x p e r i e n c e and t r a i n i n g i n w o r k i n g w i t h d y i n g p e o p l e and t h e i r f a m i l i e s . 219 4. FINDINGS FROM PILOT STUDY The r e s u l t s o f t h i s s t u d y showed t h a t 20 out o f t h e 25 q u e s t i o n n a i r e s d i s t r i b u t e d i n t h e S o c i a l Work Department a t R i v e r v i e w H o s p i t a l were completed. There were 7 out o,f 8 r e s p o n d e n t s from t h e G e r i a t r i c D i v i s i o n , 5 from t h e C o n t i n u i n g Care D i v i s i o n , and a l l 8 q u e s t i o n n a i r e s were c o m p l e t e d by t h e A c u t e Care s o c i a l w o r k e r s . Thus, an e x c e l l e n t r e s p o n s e r a t e o f 80% was a c h i e v e d . However, because o f t h e f a i r l y s m a l l sample, r e p o r t i n g o f r e s u l t s i s done i n a c a u t i o n a r y way. a) Demographic D e s c r i p t i o n o f Respondents H a l f o f t h e r e s p o n d e n t s were male and h a l f were f e m a l e , w i t h one not r e p o r t i n g . I n terms o f age, o v e r h a l f (55%) o f t h e r e s p o n d e n t s were age 4 0 and o l d e r , w i t h t h e r e m a i n i n g r e s p o n d e n t s below age 40. T h r e e - q u a r t e r (73.7%) o f t h e sample was m a r r i e d , w h i l e 4(21.1%) were s i n g l e , and one o r 5.3% was d i v o r c e d . I n terms o f l e n g t h o f t i m e w o r k i n g a t R i v e r v i e w H o s p i t a l t h e r e was q u i t e a range i n r e s p o n s e . E i g h t r e s p o n d e n t s (47.1%) had worked l e s s t h a n 2 y e a r s , 3 o r 17.6% had worked between 2 and 5 y e a r s , one res p o n d e n t (5.9%) had worked between 5 and 10 y e a r s , and a n o t h e r (5.9%) between 10 and 15 y e a r s . Remarkably, 4 (23.5%) r e s p o n d e n t s o f t h o s e who answered had worked more t h a n 15 y e a r s . 220 b) S e c t i o n One: Death A n x i e t y S c a l e (DAS) The mean o f t h e Death A n x i e t y S c a l e , t h e a r i t h m e t i c a v e r a g e , i s 6.2 w i t h a s t a n d a r d d e v i a t i o n o f 3.35. T h i s f a l l s w i t h i n t h e norm t h a t Templer (1969) had e s t a b l i s h e d f o r t h e s c a l e . K u r t o s i s i s -.742 whi c h means t h a t t h e d i s t r i b u t i o n i s skewed t o t h e l e f t o r t o w a r d s m a l l e r numbers. The d i s t r i b u t i o n i s f a i r l y n o r m al, and t h e f l u c t u a t i o n about z e r o c o u l d have r e s u l t e d from s a m p l i n g v a r i a t i o n . The range i s h i g h l y v a r i a b l e w i t h t h e minimum s c o r e a t 2 and t h e maximum s c o r e a t 13 out o f a p o s s i b l e 15. The mean s c o r e f o r each d i v i s i o n i s as f o l l o w s : 7.14 f o r t h e G e r i a t r i c D i v i s i o n s o c i a l w o r k e r s , w h i c h i s m a r g i n a l l y above t h e norm, 5.9 f o r A c u t e Care w o r k e r s , and 5.4 f o r C o n t i n u i n g Care w o r k e r s . In terms o f t h e hyp o t h e s e s made about sex, age, and l e n g t h o f w o r k i n g e x p e r i e n c e a t R i v e r v i e w H o s p i t a l , a s i g n i f i c a n t a s s o c i a t i o n between sex and d e a t h a n x i e t y i s found (r=.52 p..01) w i t h women h a v i n g h i g h e r s c o r e s t h a n men. R e s u l t s a l s o showed t h a t DAS s c o r e s t e n d e d t o d e c r e a s e w i t h age b u t not s i g n i f i c a n t l y , and were g e n e r a l l y h i g h e r f o r re s p o n d e n t s who were m a r r i e d . There were no s i g n i f i c a n t t r e n d s f o u n d i n terms o f l e n g t h o f t i m e w o r k i n g a t R i v e r v i e w H o s p i t a l . 221 c) S e c t i o n Two: Work and E d u c a t i o n a l E x p e r i e n c e The m a j o r i t y o f s o c i a l w o r k ers (80%) r e p o r t e d no e x p e r i e n c e i n w o r k i n g w i t h d y i n g p a t i e n t s as p a r t o f t h e i r s o c i a l work t r a i n i n g , whereas most (60%) r e p o r t e d such e x p e r i e n c e i n t h e i r work f o l l o w i n g t r a i n i n g . Therefore, while o n l y 3 r e s p o n d e n t s had worked w i t h d y i n g p a t i e n t s as a s t u d e n t , 12 r e s p o n d e n t s had as p r o f e s s i o n a l s o c i a l w o r k e r s , a c o n s i d e r a b l e i n c r e a s e . A t t h e t i m e o f t h e s t u d y i n March 1990, o n l y 4 r e s p o n d e n t s o r 20% o f t h e sample were w o r k i n g w i t h d y i n g p a t i e n t s . Over h a l f (55%) o f t h e r e s p o n d e n t s answered t h a t t h e s u b j e c t o f d e a t h and d y i n g was not p a r t o f t h e i r p r o f e s s i o n a l t r a i n i n g c u r r i c u l u m . I n f o r m a l t r a i n i n g s uch as i n - s e r v i c e s , workshops, and c o n f e r e n c e s on t h e s u b j e c t o f d e a t h and d y i n g , however was r e p o r t e d by a m a j o r i t y - (60%) o f s o c i a l w o r k e r s . I n f a c t , 70% o f t h e r e s p o n d e n t s f o r t h e G e r i a t r i c D i v i s i o n had done so, w h i c h demonstrates h i g h i n t e r e s t i n t h e s u b j e c t by t h i s group. I n terms o f t h e hy p o t h e s e s b e i n g t e s t e d r e g a r d i n g p a s t and p r e s e n t work e x p e r i e n c e w i t h d e a t h a n x i e t y t h e f o l l o w i n g r e s u l t s were found. When t h e i s s u e o f w o r k i n g w i t h d y i n g p a t i e n t s as a s t u d e n t was c o r r e l a t e d w i t h DAS s c o r e s , i t was fo u n d t h a t t h e s c o r e s were much l o w e r f o r t h o s e r e s p o n d e n t s who had worked w i t h d y i n g p a t i e n t s as s t u d e n t s o c i a l w o r k e r s . In f a c t , a l l o f t h e s c o r e s f o r t h e s e r e s p o n d e n t s were below 222 t h e mean. C a u t i o n i s n e c e s s a r y , however, i n i n t e r p r e t i n g t h i s r e s u l t as i t i s based on o n l y t h r e e r e s p o n d e n t s . P e a r s o n ' s R i s .42 w i t h p=.03. S i m i l a r l y , t h e f o u r r e s p o n d e n t s who were now w o r k i n g w i t h d y i n g p a t i e n t s a l l s c o r e d below t h e mean, wh i c h was un e x p e c t e d . S o c i a l w o r k ers a r e a s s i g n e d t o u n i t s w h i c h may o r may not house a d y i n g i n d i v i d u a l . T h e r e f o r e , p erhaps t h e s e f o u r r e s p o n d e n t s s c o r e s were l o w e r because w o r k i n g w i t h d y i n g p a t i e n t s on t h e i r wards has f o r c e d them t o come t o terms w i t h t h e i r own m o r t a l i t y . There were no s i g n i f i c a n t r e s u l t s f o u n d when t h e q u e s t i o n s about f o r m a l and i n f o r m a l e d u c a t i o n were c r o s s t a b u l a t e d w i t h DAS s c o r e s , i n d i c a t i n g t h a t e d u c a t i o n on t h e s u b j e c t has l i t t l e a f f e c t on DAS s c o r e s f o r t h i s sample. d) S e c t i o n Three: P e r c e p t i o n o f P r a c t i c e The r e s u l t s o f t h i s s e c t i o n p r o v i d e i n f o r m a t i o n about how t h e s o c i a l w orkers a t R i v e r v i e w H o s p i t a l p e r c e i v e t h e p r a c t i c e s and p o l i c i e s r e g a r d i n g d e a t h and d y i n g . The q u e s t i o n s were d e r i v e d from t h e o p e r a t i o n a l d e f i n i t i o n o f p a l l i a t i v e c a r e , and can be c a t e g o r i z e d a c c o r d i n g t o t h e f o u r r e m a i n i n g v a r i a b l e s o f : 1) o r g a n i z a t i o n a l c o n t e x t o f t h e h o s p i t a l , 2) r o l e e x p e c t a t i o n s o f p r o f e s s i o n a l s , 3) teamwork, and 4) exchange and conveyance o f d i a g n o s t i c i n f o r m a t i o n . U n f o r t u n a t e l y , t h e r e s u l t s a r e i n c o n c l u s i v e as t h e r e were numerous r e s p o n s e s o f "depends" w i t h no e x p l a n a t i o n o r m i s s i n g 223 d a t a . The i s s u e o f t h e o r g a n i z a t i o n o f t h e h o s p i t a l system and i t s i n h e r e n t p r e s s u r e s was b r o k e n down i n t o d i s t i n c t q u e s t i o n s t o measure whether o r not t h e o r g a n i z a t i o n was a b l e t o meet t h e i d e n t i f i e d needs o f t h e d y i n g p a t i e n t , f a m i l y , and c a r e g i v e r s , and where need f o r change i s i n d i c a t e d . I n terms o f p h y s i c a l needs o f t h e d y i n g p a t i e n t b e i n g met, 30% r e sponded "y e s " , w h i l e a n o t h e r 30% r esponded "depends". Only one r e s p o n d e n t f e l t t h a t e m o t i o n a l needs were b e i n g met, w h i l e h a l f answered "depends". The q u e s t i o n r e g a r d i n g s p i r i t u a l needs was not i n c l u d e d i n t h i s q u e s t i o n n a i r e so t h e r e a r e no r e s u l t s t o r e p o r t . A g a i n , h a l f responded "depends" t o t h e q u e s t i o n o f whether o r not f a m i l y needs were b e i n g met. H a l f o f t h e r e s p o n d e n t s a g r e e d t h a t t h e r e was a need f o r change i n t h i s a r e a . I n terms o f s u p p o r t b e i n g a v a i l a b l e w i t h i n t h e o r g a n i z a t i o n , o n l y 3 r e s p o n d e n t s f e l t t h a t i t was, w h i l e 2 d i s a g r e e d , and 8 r e s p o n d e n t s answered "depends". Over h a l f f e l t t h a t t h e r e was a need f o r change i n terms o f making s u p p o r t a v a i l a b l e t o t h e c a r e g i v e r s . Only 18.2 p e r c e n t o f t h o s e who responded f e l t t h a t t h e i r work r o u t i n e a l l o w e d them t o work " p s y c h o l o g i c a l l y " w i t h t h e d y i n g p a t i e n t , w h i l e 45.5 p e r c e n t d i d n o t . Two q u e s t i o n s c o n t a i n e d w i t h i n S e c t i o n Three o f t h e q u e s t i o n n a i r e addressed' t h e i s s u e o f r o l e e x p e c t a t i o n s p l a c e d upon t h e p r o f e s s i o n a l , i n t h i s case s o c i a l w o r k e r s . Somewhat more t h a n h a l f responded t h a t t h e n a t u r e o f t h e i r r o l e was s t e r e o t y p e d , w i t h 50 p e r c e n t r e s p o n d i n g t h a t t h e r e was a need f o r change. Only 27.3 p e r c e n t f e l t t h a t t h e i r p r o f e s s i o n a l r o l e l i m i t e d them i n p r o v i d i n g t h e r a p e u t i c c a r e t o t h e d y i n g p a t i e n t . I n r e s p o n s e t o q u e s t i o n s about t h e i s s u e o f teamwork i n t h e o r g a n i z a t i o n , t h e m a j o r i t y o f s o c i a l w o r k e r s (81.3%) a g r e e d t h a t t h e r e was teamwork. L e s s t h a n h a l f ( 4 5 . 5 % ) , however, f e l t t h a t t h e y worked as a member o f a team when w o r k i n g w i t h d y i n g p a t i e n t s . F i n a l l y , t h e i s s u e o f exchange and conveyance o f d i a g n o s t i c i n f o r m a t i o n was a d d r e s s e d i n t h e w r i t t e n q u e s t i o n n a i r e . Remarkably, no r e s p o n d e n t s answered p o s i t i v e l y t h a t p a t i e n t s were made aware t h a t t h e y were d y i n g , however, 67 p e r c e n t answered "depends". I n t e r e s t i n g l y , o n l y one resp o n d e n t f e l t t h a t t h e r e was a need f o r change i n t h i s a r e a . The r e v e r s e i s t r u e w i t h r e s p e c t t o f a m i l i e s b e i n g made aware o f impending d e a t h o f t h e i r r e l a t i v e . No one responded n e g a t i v e l y , however, h a l f o f t h e r e s p o n d e n t s f e l t t h a t change was n e c e s s a r y . The m a j o r i t y (90%) s a i d i t "depended" i n r e f e r e n c e t o whether t h e p a t i e n t u n d e r s t o o d t h a t he o r she was d y i n g . T h i s r e s u l t i s e x p e c t e d c o n s i d e r i n g t h a t t h e r e i s a h i g h p r e v a l e n c e o f n e u r o l o g i c a l d i s o r d e r s s uch as dementia i n t h e p a t i e n t s who a r e d y i n g . The same open-ended q u e s t i o n s f o u n d i n t h e t h e s i s s t u d y 225 a r e a l s o f o u n d i n t h e p i l o t s t u d y . I n r e g a r d s t o t h e q u e s t i o n c o n c e r n i n g whether a l l t h a t can be done f o r t h e d y i n g p a t i e n t i s b e i n g done, s i x t e e n s o c i a l w o r k ers responded. Over h a l f o f th e r e s p o n d e n t s i n d i c a t e d t h a t t h e r e i s not enough b e i n g done, i n c l u d i n g a l l t h e r e s p o n d e n t s from t h e G e r i a t r i c D i v i s i o n . The o t h e r h a l f s i m p l y s t a t e d t h e y d i d n ' t know o r were u n f a m i l i a r , o r l e f t t h e q u e s t i o n b l a n k . One r e s p o n d e n t from t h e A c u t e Care D i v i s i o n responded p o s i t i v e l y t o t h e q u e s t i o n . Some o f t h e n e g a t i v e comment was d i r e c t e d a t a d m i n i s t r a t i o n , t h a t because o f a l a c k o f p o l i c y t h e r e was no d i r e c t i o n , t h a t t h e r e i s an a v o i d a n c e o f t h e i s s u e from t h e t o p l e v e l s . O t h e r s s u g g e s t e d a r e a s f o r improvement such as s u p p o r t groups f o r f a m i l y and s t a f f , e x p a n d i n g t h e r o l e o f t h e s o c i a l worker, making r e s o u r c e s more a v a i l a b l e , and i n c r e a s i n g t r a i n i n g f o r p h y s i c i a n s . One respondent i n d i c a t e d t h a t t h e r e was good p h y s i c a l c a r e but t h a t t h e r e was l i m i t e d a t t e n t i o n t o e m o t i o n a l , s p i r i t u a l , and " o t h e r need". F o r example, t h e r e was l i t t l e c o n c e r n f o r t h e p a t i e n t s w i s h e s , e s p e c i a l l y p e r t a i n i n g t o p r o l o n g i n g l i f e . There was s u b s t a n t i a l l y more agreement r e g a r d i n g t h e q u e s t i o n on i m p l e m e n t i n g a s p e c i a l program t o a d d r e s s t h e needs o f t h e d y i n g p a t i e n t . A g a i n , s i x t e e n s o c i a l w orkers responded t o t h i s q u e s t i o n . A p p r o x i m a t e l y 70 p e r c e n t o f t h o s e who responded t o t h i s q u e s t i o n a g r e e d w i t h t h e p r i n c i p l e o f p a l l i a t i v e c a r e . There was a c o n c e r n e x p r e s s e d about t h e d e l i c a t e and c o n t r o v e r s i a l 226 n a t u r e o f t h i s m a t t e r , and t h a t h o s p i t a l management needed t o f o r m a l l y a d d r e s s t h i s i s s u e . One re s p o n d e n t p r e f e r r e d t o see an i n c r e a s e d l e v e l o f s t a f f i n g t o a l l o w t i m e f o r p a l l i a t i v e . c a r e r a t h e r t h a n s e g r e g a t i n g d y i n g p a t i e n t s on a s p e c i a l u n i t . The s o c i a l w o r k ers a l s o i n d i c a t e d t h a t t h e G e r i a t r i c D i v i s i o n s h o u l d be g i v e n p r i o r i t y f o r a program because p e r h a p s t h e r e were t o o few d y i n g p a t i e n t s i n t h e o t h e r d i v i s i o n s ( e x c ept f o r sudden d e a t h s such as s u i c i d e ) . One r e s p o n d e n t answered " d e f i n i t e l y , R i v e r v i e w p a t i e n t s d e s e r v e i t ! " . 5. DISCUSSION An o v e r a l l i m p r e s s i o n o f t h e r e s u l t s o f t h i s s t u d y emphasize t h e c o n t r o v e r s i a l and s e n s i t i v e n a t u r e o f t h e i s s u e o f p a l l i a t i v e c a r e . The p o l i t i c a l debate about t h i s i s s u e has been simmering f o r a p p r o x i m a t e l y t h e l a s t two y e a r s . U n d e r s t a n d i n g t h e e m o t i o n a l h i s t o r y o f p a l l i a t i v e c a r e a t R i v e r v i e w H o s p i t a l can h e l p us t o a p p r e c i a t e t h e h e s i t a n c y , and o t h e r w i s e v e r y n e u t r a l s t a n c e t a k e n by t h e s o c i a l w orkers i n r e s p o n s e t o t h e q u e s t i o n n a i r e . T h e i r r e s p o n s e c e r t a i n l y r e f l e c t s t h e s o c i e t a l a t t i t u d e o f k e e p i n g t h e i s s u e o f d e a t h and d y i n g i n v i s i b l e . By not s p e a k i n g out more f o r c e f u l l y and d e f i n i t i v e l y , t h e s o c i a l w o r k ers a r e i n e f f e c t p a r t i c i p a t i n g i n t h e ' c o n s p i r a c y o f S i l e n c e ' . The Death A n x i e t y S c a l e measures our p e r s o n a l a n x i e t y 227 about d e a t h . I t was e x p e c t e d t h a t t h e s c o r e s f o r t h i s s e c t i o n o f t h e q u e s t i o n n a i r e would be c o n s i d e r a b l y h i g h e r t h a n t h e y were. However, t h e o r d e r i n g o f t h e DAS s c o r e s a c c o r d i n g t o D i v i s i o n s was as e x p e c t e d . I t was p r e d i c t e d t h a t t h e G e r i a t r i c D i v i s i o n would have t h e h i g h e s t mean o f t h e t h r e e d i v i s i o n s . T h i s i s because d y i n g p e o p l e i n our s o c i e t y t e n d t o be o l d e r and, o f c o u r s e , t h i s d i v i s i o n c a t e r s t o t h a t o l d e r group. Working w i t h an o l d e r p o p u l a t i o n l i k e l y t o d i e may i n c r e a s e one's l e v e l o f d e a t h a n x i e t y because i t f o r c e s one t o t a k e s t o c k o f i s s u e s o f m o r t a l i t y . However, t h e r e s u l t s a l s o showed t h a t t h o s e s o c i a l w o r k ers who were c u r r e n t l y w o r k i n g w i t h d y i n g p e o p l e had a l o w e r d e a t h a n x i e t y , perhaps i n d i c a t i n g t h a t t h e y had d e a l t w i t h some o f t h e i r own d e a t h i s s u e s . Thorson (1977) d e m o n s t r a t e d t h a t d e a t h a n x i e t y i s p o s i t i v e l y c o r r e l a t e d w i t h m a j o r i n g i n s o c i a l work, and b e i n g f e m a l e ; and i s n e g a t i v e l y a s s o c i a t e d w i t h b e i n g male ( i n L o n e t t o and Templer, 1986). T h i s s t u d y c o n f i r m s t h i s f i n d i n g as p r e d i c t e d . The r e a s o n s f o r t h e h i g h e r DAS s c o r e s f o r fem a l e s i s not c l e a r . However, i t s h o u l d be remembered t h a t f e m a l e s have t e n d e d t o s c o r e h i g h e r on most s e l f - r e p o r t measures o f a n x i e t y , d i s t r e s s , and maladjustment ( L o n e t t o and Templer, 1986). As w e l l , t h e g r e a t e r degree o f e x p r e s s e d d e a t h a n x i e t y may be t h e p r o d u c t o f s o c i a l i z a t i o n . The r e s u l t s o f t h e q u e s t i o n c o n c e r n i n g t h e v a r i a b l e o f 228 e d u c a t i o n and t r a i n i n g were somewhat s u r p r i s i n g . The r e s p o n d e n t s had more f o r m a l t r a i n i n g on t h e s u b j e c t o f d e a t h and d y i n g t h a n was a n t i c i p a t e d . A n e g a t i v e c o r r e l a t i o n between e d u c a t i o n and DAS s c o r e s was e x p e c t e d , however, t h i s d i d not appear. Perhaps t h i s r e s u l t was due t o t h e f a c t t h e average age o f t h e s o c i a l w o r k ers was between 40 and 4 9 y e a r s o f age, so perhaps f o r m a l t r a i n i n g was so f a r i n t h e p a s t i t had l o s t i t s i m p a c t . I n t h e s t u d y by B h o p a l (1989) at R i v e r v i e w H o s p i t a l , e d u c a t i o n was l i s t e d as a main p r i o r i t y by t h e l a r g e r s t a f f o f R i v e r v i e w . However, t h e s o c i a l w o r k e r s as a group a t R i v e r v i e w H o s p i t a l d i d not seem t o l a c k e d u c a t i o n and t r a i n i n g , as t h e r e s u l t s have shown. The n e x t major f a c t o r i n c a r i n g f o r t h e d y i n g p a t i e n t i s t h e o r g a n i z a t i o n o f t h e h o s p i t a l system i t s e l f . I t i s not s u r p r i s i n g t h a t t h e r e s u l t s o f t h i s s t u d y show t h a t p h y s i c a l needs a r e b e i n g met, as R i v e r v i e w H o s p i t a l i s a v e r y m e d i c a l l y o r i e n t e d h o s p i t a l . Almost h a l f o f t h e r e s p o n d e n t s answered p o s i t i v e l y t o t h e q u e s t i o n on p h y s i c a l needs, w h i l e a n o t h e r 46% answered t h a t i t "depends". A l s o , i t i s not u n e x p e c t e d t h a t t h e r e i s i n a d e q u a t e a t t e n t i o n t o e m o t i o n a l needs, as o n l y 7% o f r e s p o n d e n t s t h o u g h t e m o t i o n a l needs were b e i n g met. There was not a c l e a r r e s p o n s e t o f a m i l y needs and c a r e g i v e r needs b e i n g met. Not one r e s pondent answered p o s i t i v e l y t h a t t h e needs o f t h e f a m i l y were b e i n g met, w h i l e most t h o u g h t i t "depends". The same s i t u a t i o n e x i s t s i n r e s p o n s e t o t h e 229 q u e s t i o n r e g a r d i n g needs o f t h e c a r e g i v e r s . However, a g r e a t e r demand f o r change i n t h e a r e a o f s u p p o r t i n g t h e c a r e g i v e r was e x p e c t e d , as i t i s i n t h e i r b e s t i n t e r e s t t o r e s p o n d p o s i t i v e l y t o t h i s . I n o r d e r t h a t o r g a n i z a t i o n a l needs can be met, i t i s n e c e s s a r y t h a t t h e n a t u r e o f t h e a c t i v i t i e s and b e h a v i o u r s w i t h i n i t be p r e d i c t a b l e . The p r e s e n c e o f a d y i n g p e r s o n i n a c u r e - o r i e n t e d o r g a n i z a t i o n d i s r u p t s t h e smooth c a r r y i n g out o f t h e o b j e c t i v e s . The p s y c h o l o g i c a l demands o f t h e s e p a t i e n t s may be g r e a t e r t h a n t h e p h y s i c a l demands, but o f t e n do not r e c e i v e as much a t t e n t i o n . T h i s s t u d y s u p p o r t s t h e a s s e r t i o n t h a t p s y c h o l o g i c a l c a r e i s not c o n s i s t e n t l y r e f l e c t e d i n p r a c t i c e due t o t i m e p r e s s u r e s and h o s p i t a l m i l i e u . A l m o st h a l f o f t h e r e s p o n d e n t s t h o u g h t t h a t t h e i r work r o u t i n e d i d not a l l o w them t i m e t o work " p s y c h o l o g i c a l l y " w i t h t h e d y i n g p a t i e n t . The t h i r d f a c t o r i s r o l e e x p e c t a t i o n s p l a c e d upon t h e h e a l t h c a r e p r o f e s s i o n a l . The l i t e r a t u r e has s u g g e s t e d t h a t c e r t a i n e x p e c t a t i o n s and s t e r e o t y p e s p r e s e n t r e a l problems t o t h o s e p r o f e s s i o n a l s a t t e m p t i n g t o g i v e a p p r o p r i a t e c a r e t o d y i n g p a t i e n t s . A m a j o r i t y (56%) o f s o c i a l w o r k ers a g r e e d t h a t t h e i r r o l e i s s t e r e o t y p e d and t h a t t h e r e was a need f o r change i n t h i s a r e a . One respondent even went so f a r as t o su g g e s t t h a t t h e s t a f f -on t h e u n i t he worked on had no i d e a what he d i d . The s t e r e o t y p i n g o f r o l e s i s v e r y d i s r u p t i v e t o 230 t h e c o h e s i o n f o und i n s t a f f , as w e l l as communication. The r e s u l t s c o n c e r n i n g p r o f e s s i o n a l r o l e l i m i t i n g t h e p r o v i s i o n o f c a r e was e x p e c t e d , e s p e c i a l l y f o r s o c i a l w o r k e r s . The n e x t major f a c t o r i d e n t i f i e d i n t h e l i t e r a t u r e i s t h e teamwork amongst h e a l t h p r o f e s s i o n a l s . I n g e n e r a l , t h e r e s p o n s e o f t h e s o c i a l w o r k ers (81%) was t o s u g g e s t t h a t t h e r e was good teamwork i n t h e o r g a n i z a t i o n . T h i s would s u g g e s t t h a t R i v e r v i e w H o s p i t a l i s a v e r y u n i q u e s e t t i n g i n which m o r a l e i s v e r y h i g h , as w e l l as t h e s p i r i t o f c o o p e r a t i o n . I n t e r e s t i n g l y , l e s s t h a n h a l f o f t h e r e s p o n d e n t s d i d not f e e l as i f t h e y were p a r t o f a team when w o r k i n g w i t h d y i n g p a t i e n t s . Perhaps t h i s i s a r e f l e c t i o n o f t h e s t a t u s one f e e l s as a s o c i a l worker and as a n o n - m e d i c a l p r o f e s s i o n a l i n a m e d i c a l l y o r i e n t e d i n s t i t u t i o n . The l a s t i s s u e i s t h e i s s u e o f d i a g n o s t i c i n f o r m a t i o n , and t h e manner i n w h i c h i t i s communicated. I t appears t h a t o n l y under c e r t a i n c i r c u m s t a n c e s a r e p a t i e n t s t o l d t h e y a r e d y i n g . I n l i g h t o f t h e f a c t t h a t t h e f i n d i n g s a l s o show t h a t s o c i a l w o r k ers do not u s u a l l y e x p e c t t h e p e r s o n t o u n d e r s t a n d t h a t he o r she i s d y i n g , t h i s i s not a l l t h a t u n a n t i c i p a t e d . However, t h i s c o u l d be a r e a l e t h i c a l i s s u e i f common p r a c t i c e becomes n e v e r t o t e l l t h e p a t i e n t t h a t he o r she i s d y i n g because i t i s not b e l i e v e d t h a t he o r she w i l l u n d e r s t a n d . N e v e r t h e l e s s , i t r e a l l y p o i n t s t o t h e need t o b e t t e r u n d e r s t a n d t h e meaning o f d e a t h f o r t h e m e n t a l l y i l l and how 231 we as p r o f e s s i o n a l s o p e r a t e w i t h t h a t u n d e r s t a n d i n g . The f i n d i n g s a l s o show t h a t f a m i l i e s a r e t o l d about t h e i r r e l a t i v e s impending d e a t h . T h i s i s a t l e a s t a p o s i t i v e f i n d i n g . Thus, i t can be c o n c l u d e d t h a t t h e s i x major f a c t o r s r e l a t e d t o t h e r a p e u t i c c a r e o f d y i n g i n d i v i d u a l s a r e a t work a t R i v e r v i e w H o s p i t a l and t o some degree n e g a t i v e l y impact t h e c a r e g i v e n t o d y i n g i n d i v i d u a l s . The f a c t o r s o f e d u c a t i o n and teamwork do not seem as i m p o r t a n t t o t h i s sample, as do t h e f a c t o r s o f t h e o r g a n i z a t i o n o f t h e h o s p i t a l and i t s i n h e r e n t p r e s s u r e s , and t h e conveyance and exchange o f d i a g n o s t i c i n f o r m a t i o n . I f and when R i v e r v i e w H o s p i t a l has f i n a l i z e d t h e p a l l i a t i v e c a r e g u i d e l i n e s and p o l i c y , i t would appear t h a t i s s u e s such as s t e r e o t y p i n g o f r o l e and r o l e r e d u c t i o n , and s u p p o r t f o r t h e c a r e g i v e r s must be d e a l t w i t h . S o c i a l w o r kers can c a r v e out a r o l e f o r t h e m s e l v e s as f a c i l i t a t o r s o f t h e f u n d a m e n t a l changes t o t h e environment t o e l i m i n a t e o r reduce t h e s e v a r i a b l e s . The u s e f u l n e s s o f t h i s s t u d y was t h e i d e n t i f i c a t i o n o f t h e most p r e s s i n g i s s u e s f a c i n g s u c c e s s f u l i m p l e m e n t a t i o n . I t appears t h a t t h e s o c i a l w orkers a r e i n agreement t o h a v i n g a p a l l i a t i v e c a r e u n i t and/or p a l l i a t i v e c a r e team, p r e f e r a b l y i n t h e G e r i a t r i c D i v i s i o n . As w e l l , i t i s shown by Buckingham e t a l . (1972)'s p a r t i c i p a n t o b s e r v a t i o n s t u d y t h a t s e r v i c e t o d y i n g p a t i e n t s i s b e s t a c h i e v e d u s i n g t h e s e 2 3 2 modules. The n e x t phase o f r e s e a r c h i n t h i s a r e a would n e c e s s a r i l y be d i r e c t e d a t e x p l o r i n g what such a program would l o o k l i k e c o n s i d e r i n g t h e un i q u e and s i m i l a r needs o f t h e d y i n g m e n t a l l y i l l . T h i s s t u d y was l i m i t e d by t h e i n s t r u m e n t . I n t h e n e x t s e c t i o n , t h e m o d i f i c a t i o n s made t o t h e i n s t r u m e n t w i l l be o u t l i n e d . Based on t h i s s t u d y , i t can be c o n c l u d e d w i t h c a u t i o n t h a t some form o f p a l l i a t i v e c a r e does e x i s t a t R